[*Client names changed for privacy.]
One of the characters in my novel, Complicity in Heels, is Marty Frank. He is the older brother of the main character, Nikki Frank. Of all the characters who inhabit the world of Parkbridge, Georgia, Marty is unique. He has Down syndrome.
What is Down Syndrome?
In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. The nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.
Down syndrome is a genetic disorder that occurs when an additional copy of the pair of chromosomes at marker 21 is created. Another name for this disorder is Trisomy 21. The additional chromosome can cause mental and physical delays as well as the development of disabilities as the child grows into an adult. Some of the most common traits are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.
How Common is Down Syndrome?
Approximately one in every 700 babies in the Unites States is born with Down syndrome, making it the most common genetic condition. This equates to about 6,000 babies in the United States a year.
My Experience with Down Syndrome.
When I left the Marines, most of the jobs I was offered in the civilian sector were related to security. Hiring managers saw the word “Marines” on my resume and automatically assumed I would be good at loss prevention. Once you step on the security field track, it’s hard to get off. Every job involved watching someone or something for a certain period of time.
One such job I held was for a secure residential facility for wayward youth. The residents had serious behavioral and substance abuse issues. They required 24-hour supervision in a secure perimeter setting with a minimum of 10 staff members on hand to run things. From there, I was recruited to work with mentally disabled men between the ages of 24 and 60 in personal care homes throughout the city. My job was to provide watchful oversight to ensure safety in the home, drive clients to appointments, and help them manage their prescription drugs. Occasionally, I was also expected to teach life skills such as budgeting, purchasing groceries and exchanging money for goods and services.
At first, I was apprehensive about taking on this type of work. I was concerned about my ability to communicate clearly with clients. I was also worried about sudden violent outbursts or other forms of uncontrollable behavior my clients might exhibit.
During my 90-day training period, I quickly learned that my concerns reflected common stereotypes about the mentally disabled community. Other commonly held misconceptions include the belief that the mentally disabled are incapable and cannot provide for themselves and that those without mental disabilities should feel sorry for them.
Once I graduated from training, I was assigned the evening shift at a residence that housed three men. My clients’ names were *Clay, *Eddie, and *Jerry. *Jerry was the senior, at 50 years of age, and required the most supervision. He had Down syndrome in addition to Obsessive-Compulsive Disorder (OCD). I prepared his meals and cleaned the kitchen, looked over his clothing selection for the next day, and made sure he showered and shaved before he went to bed. During the remainder of my shift, I recorded my observations about *Jerry in several log books and remained awake until staff members on the next shift relieved me.
I recall one evening when the four of us returned home from basketball practice. It was late and we had a lot to do before bedtime. The previous shift had already prepared dinner, so I decided to feed Jerry first, have Eddie pick out his clothes for the morning, and tell Clay to shower and shave. While all that was going on, I was in the back room counting the medication and bouncing the number of pills and the dosages off the guidelines in the medication log book. Jerry finished his meal and brought me his dishes. Busy, I told him to place them in the sink. Clay was still in the shower and Eddie hadn’t quite figured out what he wanted to wear in the morning.
Once I had completed the med count, I returned to the kitchen. To my amazement, Jerry had wiped down the dining room table, loaded the dishwasher, swept the floor, and cleaned the countertops. The kitchen was spotless, yet I was furious. Why? Because I had been doing all those chores for him for the past 30 days. It had never occurred to me that Jerry was fully capable of doing them himself. I had bought in to the stereotype that he was incapable because of his mental deficiency. I later found Jerry in the den, stretched out on his La-Z-Boy with the widest grin on his face, staring back at me. I just shook my head.
“You got me,” I said. “Congratulations.” It was a truly humbling experience.
I spent two years at that residence with those guys while I worked my way through school.
Drawing on My Exposure.
As a student at Winghill Writing School, I enrolled in the novel writing course. For one of the teaching modules, Writing What You Know #8, we students had to create a list of our life experiences, analyze it, and determine whether we could use any of that background for characters, plots, or settings.
In the areas of character and setting, I chose to use my experience caring for the mentally disabled.
When I was constructing my lead character, Nikki Frank, my instructor told me that she was “too plain” and that I needed to “spice up” her life. I thought about it, but nothing came to mind. I glanced at her bio sheet. Family structure, father’s name, mother’s name. Then it hit me. Siblings. The word leapt right off the paper. Nikki needed a brother, and not just any brother, but one with special needs. It was then that Martin Sullivan Frank was born.
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