Being out in the world with a disability means I never know what kind of experience I will have. My day could be completely uneventful, and I will go about your business without getting into it with anyone; then there are times when out in my neighborhood, and it gets complicated.
I wrote about an example of one of those times in my last posting, "Hostage to Ignorance." If you missed it, give it a read.
The days that I do enjoy are the ones where it ends with a learning experience. When someone recognizes my disability and asks me a question,
it offers me an opportunity to explain my disability and capacity to do just about everything anyone can do with all their fingers. I love these because it helps break down discrimination barriers, build up understanding, and empathize with a person with a disability—a huge plus.
The more we can learn and experience positive and meaningful interactions, the more that the world can understand and accept us as part of it.
Over the years, I realized a pattern in my behavior. It's a brief acknowledgment to myself. Before I leave the car or enter into a room where people are, I have a small uptick in anxiety, not too much but just enough that I find myself taking a deep breath bracing myself for what might happen when I have to interact with people. Sometimes it happens so fast that I barely notice, and other times it feels very purposeful. Either way, I never know what ignorance may be in store for me when I walk in, so I have to boost my self-confidence to handle it. The last time I shared one of my more devastating encounters with you, today I'm going to tell you about a bizarre one.
It all starts with a trip to the doctor's office on a sunny day in spring when I left work on lunch to see my doc because I thought I had a sinus infection. Before I opened the door to the office, I quickly closed my eyes, inhaled sharply, and let it release. Pulling my shoulders back and with my head held high, as I headed into the doctor's office. The office was not particularly busy, only three other people in the waiting room, what a relief! I would be able to find a place to sit alone. I walked up to the window, signed my name into the check-in counter, sat down away from the others, and pulled out my book to read while waiting. I always need to use two hands to hold my book as one finger just doesn't cut it most of the time and means my hands are apparent to other people.
I only got about a paragraph in, and I hear, "Hello." I ignored it.
When the nurses call us to the back, they use our name. I didn't know anyone there, so I did not have any cause to think this hello was for me. I was so wrong! I continued to try and read the next paragraph when I looked up from the pages to see a man walking over to me. He sat down in the chair to my right side and leaned in. I could feel myself pull away from him and hold the book across my chest, and I asked, "Can I help you?"
The man did not hesitate; he went right for it. "I saw your hands. Is your family from Florida?"
"No," I replied.
Trying to ignore him, I looked down at my book. The man's face positively lit up from excitement, "Are you related to Grady Stiles?"
He continued, "The killer who went to jail and then was murdered himself? They called him Lobster Boy. He had hands like yours and was in a wheelchair."
Could you imaging my utter shock? I'm not sure if I could have contained the look of surprise and horror on my face. What, because I have the same disability as another person, I am automatically related to them? In this case, it's, "Are you related to a murderer?"
Lord help me!
He asks again, "Are you sure you are not related? There is this town, Gibsonton, Florida, that is all carnival people. That's where they live and go in the offseason. He worked in the freak show at the carnival. He didn't like his daughter's boyfriend and had him killed. And then he was murdered."
Oh, great, it was worse. This man thought I was related to a carnival freak show performer who kills people. Just because I have a disability doesn't mean I should be a sideshow carni. That was downright offensive! This whole moment felt surreal. As if I was part of a lousy sitcom that brought in this man to annoy a lead character.
Before I could respond to this nonsense, sweet relief had come when a nurse emerged from the back rooms and called my name. "Oh. That's me", I said, and I hurried off without a glance behind me.
The encounter was brief, but I still could not shake the weird feeling I had when I got back to work. Was this man just making stuff up, or was he telling me the truth. So I did what anyone else would have done. I googled it! Well, well, well. I couldn't believe it, this man was correct! At this point, I was disgusted. I'm shaking my head as I write this to you.
Here is a quick rundown of what I found and some links so that you can have fun researching this story for yourself. Sorry if you go down the rabbit hole, but I have no remorse; it's just too wacky to believe.
Grady Stiles Jr. was born with Ectrodactyly, and he was never able to walk, so he used a wheelchair. Ectrodactyly had been prominent in his family for many generations. His father, Grady Stiles Sr., cashed in on his son's disability by having him perform in the freak show for the carnival. His stage name was a Lobster boy because they thought his lands look like lobster claws. He was always the star of the show. He was married and had children, and it turned out he was also a violent abuser, and his wife divorced him.
When his daughter was older, she fell in love, and Grady disapproved. The daughter had plans to run away to marry the love of her life, but Grady wasn't having any of this. He used a shotgun and murdered his daughter's boyfriend. Of course, he was found guilty of murder, but he did not serve his jail sentence in prison. The judge believed the prison was not equipped for his disability and served his time at home.
A few years later, his wife, whom he had remarried, had a neighbor and a son from another marriage kill Stiles, who took two shots in the head—ending his reign of violent terror on his family.
While this whole interaction was shocking for me, it is not too far off the mark on how people view disability. Like we belong in a freak show. Gawked at with disgust and used to portray bizarre, dangerous monstrous non-human creatures. Characters to be frightened, grossed-out by, and not to be trusted.
People like myself and others with limb and hand differences work hard to get rid of the stigma that comes with our disabilities. All that we do to progress forward and show that we deserve the same respect, dignity, and equality as everyone else without a disability. The world is showing us that we have not progressed very far.
We all have a part to play in this life. We either step up and defy the status quo constructed by our culture and transform our beliefs into positive change or stand back and let our discomfort for those who are different perpetuate the stigma and inequality we face every day. So what to choose? Live with discrimination, prejudice, and the cruelty of ignorance, or live with equality, Love, acceptance, peace, and connectivity of our world? I choose Love!
I Make This Declaration!
I am not a monster,
I am not a sideshow freak.
I am not a mutant
I am not a witch
I am not dangerous
I do not have leprosy, and you can't catch it.
I am amazing
I am beautiful
I am smart
I am strong
I am unique
I am fiercely limitless
I am creative
I have potential
I can do incredible things
I love, and I am loved
Love to you all,
The Fingerless Kitchen
Links to stories about Grady Stiles.