The Beginning Of The Workshop

“Hey, look at the Retards,” an eighth grade boy yelled out to his friends nearby.

“Look at me; I look like them,” an insensitive seventh grade girl shouted as she imitated one of the special need students who walked with a limp. I watched them slowly move in on their disabled peers like a pack of wild wolves who were ready to pounce on anything that moved.

“Please God give me the strength not to break down.” I prayed. Tears rolled down my cheeks as I looked around the room at many of the typical students who had stopped dancing to stare, point and make fun of the special needs students who had joined them at the Middle School’s back-to-school dance in Bonita Springs, Florida. Each of the special students attended a Life Skills class and had either a mental, physical or learning disability that kept them from studying with the other students.

“Mamma, Mamma,” Rachal shouted running into the house a week earlier. “A Dance Mamma, a dance is com’n to my school; will you come and dance with me?” I held her in my arms and thanked God that He had brought us this far.

It was April 9, 1992; Gaithersburg, Maryland and Rachal had just been born. Everything about her was perfect and beautiful. Six weeks later our world dramatically turned upside down. Rachal was lying between my husband and me when she began to experience a grand mal seizure; this caused her body to bounce on the bed in a grotesque manner. The next thirty seconds seemed like an eternity.

As the weeks slowly crept by, we began to lose count of the number of seizures Rachal endured. Sometimes they lasted only moments. Other times they would start and stop during a 45-minute period of time. I immediately began a journal that would describe everything happening around Rachal, for example: what she ate, how long she slept, the sounds that woke her, etc. I wanted to try and help determine what was causing these horrible episodes.

I even began videotaping the seizures. At first I thought, “What Mother would ever do this?” But then the doctors began thanking me, explaining that it helped them see what was happening to Rachal during her seizures.

We began visiting pediatricians who could not establish why she was seizing, and hospitals that could not stop the seizures. Finally we went to neurologists who could offer no hope.

“She will be mentally retarded for the rest of her life,” Rachal’s pediatric neurologist from Johns Hopkins Hospital told me. “You need to seriously consider placing her in an institution,” he continued. “Rachal has Infantile Spasms, a degenerative brain disease that is slowly deteriorating the healthy sections of her brain.” He then began to speak about Rachal as if she held no value.

“She will never develop beyond an infant’s mentality. Getting her out of diapers; her walking and communicating with you will not be possible.” And then he finished off his thoughts with, “She will never have a normal childhood.”

I had been raised in a loving Christian home. My relationship with God was always a daily communication of dreams, fears and hopes. Ever since I can remember, my Mother would come into my room to say “Good Night” and sit on the edge of my bed to talk with me about my day. Then she would slowly draw the Sign of the Cross on my forehead. As she walked towards the door she would quietly say, “Talk to Jesus honey, talk to Jesus.” Every night I would do just that. I have always considered Jesus to be my best friend.

It was September 1992. I remember crying out to God as I looked out over the parking lot of the hospital in Baltimore, Maryland. Why God? Why are you putting Rachal through this? She is just six months old. She does not even know what is happening to her. Please God hold her tight….help us to make the right decisions for her life with your guidance. And please someday let all of this make sense to me.

At the school dance, as the music got louder and the reflection of the strobe lights danced around the room I did not get angry. I saw fear and ignorance in the faces of these typical students. I saw a society of youth who had not been taught compassion or empathy towards those who were different from them. Did they realize no one volunteers to be disabled; that it happens at birth or a later time in a person’s life due to unforeseen circumstances? Did these typical sixth, seventh and eighth grade students realize that they were sharing a dance floor with a group of visiting angels (as I affectionately called them); that it takes an entire team of speech, occupational and physical therapists as well as all types of specialists to keep them alive? No, I was not angry; I was inspired.

As I watched the typical middle school students continue to make fun of the special needs students, the thought came to me; they have no idea what life is like, even for one minute - let alone a lifetime, for one of these special-abled kids. They have never had to live without their sight, hearing or speech. They have no compassion because they feel no empathy.

In August of 2003 the inspiration for a technique to educate others began to take shape in my heart. I knew I had found my passion and the reason, after all these years, Rachal had been given to me.

The concept of the Workshop was one that allowed typical, able-bodied people the opportunity to experience what it is like to walk-in-the-shoes, for just a moment in time, and to wrap themselves up in a physical, mental or learning disability; and to discover if it would it touch and change their hearts.

I poured through countless journals that I kept while doctors, therapists and educators had worked with Rachal. I contacted agencies in the Washington, DC and Baltimore, Maryland areas to ensure I was on the right track in conveying the message on disability awareness to the general public.

I met with Jill Bonnell, the Life Skills teacher and John Basel, the Principal at Bonita Spring Middle and embraced their unending enthusiasm and suggestions for the Workshop. Mr. Basel offered me the opportunity to conduct a pilot to assess the Workshop would be received by the sixth, seventh and eighth graders. I was elated! I had three months to put the program together.

I began to imagine what would inspire these students to learn. Knowing that I, myself, am a hands-on learner and one who believes that death can occur by PowerPoint; I had to gain their respect by thinking outside traditional teaching methods. “Show me, don’t tell me” is my motto. I know if a person speaks to me with words only, I begin daydreaming, and many times not able to perform the task. However, if that same person shows me the task with a tangible object and I can participate in the learning experience, I can immediately apply hands-on learning and accomplish the assignment. My goal was to develop a program for typical people – teaching them in a hands-on, show-me manner about people with physical, mental or learning disabilities.

In November of 2003, the Sensitivity Awareness Workshop of Southwest Florida, Inc. had become a business. A Program Description had been created to include our Mission Statement, Goals, Objectives and Scope of Work. Our goal is to create a comprehensive program that touches the lives of these students one heart at a time. I created a Reflective Journal that is given to each Workshop participant which enables them to utilize this new information about people with physical, mental and learning disabilities and apply it immediately to their lives. The journal contains thought-provoking questions that challenge the participants to put into practice what they learned. My favorite page is an Action Commitment that challenges the students to take responsibility in performing “An Act of Kindness” towards someone different from themselves. Once the Act is completed, they sign and date the page and look back on it in years to come. We would provide surveys so each student can share with us what they learned and how their behaviors will change towards those with special abilities.

The pilot workshop began with a group of 40 eighth graders. I shared with them Rachal’s life and had pictures enlarged showing Rachal during her EEG’s and therapy sessions. Also chronicled was Rachal performing everyday activities such as enjoying a slice of pizza and a soda. I wanted them to see Rachal as a person, not Rachal with all the disabilities with which she had been labeled.

I remember being nervous. But from the moment I began to share my heart, many of the students’ hands went into the air to ask me questions. Their questions ranged from the total numbers of seizures Rachal had experienced to how many months she lived in the hospital. As we began to show Rachal as a sixth grader, their fear and ignorance slowly began to disappear. The transformation was powerful. Compassion was being embraced. The students began to accept her because they were provided the opportunity to experience what her life had been like. I emphasized that though this was “Rachal’s Story,” every student with a special ability has a unique story to share.

Next, we needed to teach empathy through the hands-on interactive portion of the Workshop. We offered many different types of physical, mental and learning disabilities. These tasks included: taking a math test with the numbers flipped backwards on the page, to simulate a learning disability; putting a jacket on and playing ball with one arm tied behind their back, to simulate a Gross Motor disability; tying a sneaker and unbuttoning a button without using their thumbs, to emphasize a Fine Motor disability; taking away their sight and asking them to put shaped pieces together, to simulate a Visual impairment. Time and time again, we challenged each student to step outside his or her natural abilities they take for granted every day and imagine what life would be like without that ability.

As the first Workshop came to an end, we all gathered around the room to discuss what we had learned. I noticed one student with his head hanging over his lap quietly crying. I remember looking at him for a moment and wondering what happened to him, but I had 39 other students who were asking questions and who were ready to share. Then this boy raised his hand. I called on him and asked him if he was okay. With tears rolling down his face he began to speak. He said he was crying because all his life he had made fun of those who were handicapped. He had called them retards and laughed at them. He went on to say that he was sorry and what he had learned during the Workshop would change his life forever.

All of the students and teachers were silent. No one spoke. Each person was lost in his or her own personal convictions. Swallowing the lump in my throat and blinking back my own tears. I slowly explained that each person can forgive themselves for how they had treated those with special needs in the past. This new information they received will allow them, from this point forward, the freedom to have compassion and empathy towards those who are different from them. There was nothing more for me to say. The Workshop had touched the lives of these students one heart at a time.