Outskirts Press, INC.

An Engaging and Uplifting Read

Meet Jackie, Chuck, Jonathon, and Jamee—four people intricately linked by the common thread of disability. Roots and Fences tells of their life experiences, as well as their friends and families, from a phenomenological perspective. It’s a compelling collection that exposes the reality of life for those with intellectual disabilities and the people who love them. Through these connective stories spanning over 50 years, you will laugh, cry, share in the adventures, meet the families, and perhaps even change your views about those who are labeled “disabled.” “As I read, I felt I was reading something epic. Sharon calls it generational. She seems to be in the ideal location to witness all these stories of disability and how they progressed to more positive outcomes. The story starts with Jackie in 1937, then moves through the ’60s with Chuck and continues to the present with Jonathon and Jamee. Through all the stories an epic meta-story takes form.” —Adam Baez, Special Educator “Instructive and entertaining, Roots and Fences takes us to a place inside families that encourages us to consider possibilities rather than focus on limitations. Along the way, we are saddened, angered, amused, touched, uplifted, and empowered. Above all, we find reasons to be optimistic about the future of people with disabilities.” —Tom Mihail, PhD, Chair of Special Education Graduate Studies in Education Purdue University Calumet

“Take your Barbies and just go!” My lip starts to quiver and tears come to my eyes, “You’re a big crybaby! You act retarded, just like your mongoloid Aunt Jackie, AND we don’t want to play with you!” The twins, Mary Jo and Mary Ann sneered those words at me in a mean sing -songy voice. I did not hear the words as much as I felt the rejection. I was hurting in side and my stomach felt tight.I really wanted to play Barbies that day. As I stood there with tears coming to my eyes and my lip quivering, I was going to ask them again if I could PLEASE play and even offer them one of my dolls or cases.It suddenly hit me, I actually heard the words they said. They called my Aunt Jackie RETARDED. They called her Mongoloid. “No, Jackie’s not retarded, my friend Debbie’s brother Chuck is retarded, and I heard him called Mongoloid, too.” Those words described Chuckie, not my Aunt Jackie. Jackie could talk. Jackie took care of me. Jackie liked to play Barbies with me and my friends. I loved Jackie. Nothing made sense and I and started to tremble. A big gulp sound came from somewhere and I started to sob as I ran back towards my house. Running towards home it seemed like the gate to my yard was miles away. With tears blinding my eyes and dragging my Barbie cases, I finally reached my yard. I dramatically threw the cases on the ground. I heard the girls laughing at me in the background.I ran faster through the yard and into the house. By now, I was crying loudly. Throwing open the back screen door, I yelled into the house, “M-o-o-o-om, the Twins said Jackie is retarded.” My grandmother was sitting at the end of the kitchen table in her usual spot and gave me a scary,dirty look. My voice was bellowing through the house.At this point, I was crying hard and loud, bent over and sobbing with tears pouring down my face. My mom ushered me out of the kitchen and kept saying: “Shhh,Sharon , calm down.” “I,I,I can’t” “I am trying Moooom”. “They are so mean.” “Why,( deep breath) did they say that?” I was loud and hysterical. My mom pushed me into Aunt Jackie’s bedroom. Looking back, I’m now thinking Jackie might have been right there in the kitchen or in hearing distance as the first floor of our house was not large. My mom closed the door and said, “Oh, Sharon I should have told you, but I couldn’t.” I calmed down enough to listen, but the tears kept coming to my eyes. I swiped one from my cheek and looked into my mom’s concerned eyes. She told me Jackie was slow and that is why she lived with us and never got married. She did not say Retarded, she did not say Mongoloid. She really did not give me an explanation I could understand. She told me that I shouldn’t listen to mean people. I was told to stop crying and to NOT say anything to Jackie or in front of my grandmother ( Jackie’s mother). I stamped up the stairs to my bedroom and plopped on the bed, continuing to cry and talk to myself. I had only wanted to play pretend that day. I did not want to hear bad things about my Aunt Jackie. I loved my Aunt Jackie. I pictured the event in my head and thought about who was sitting at the table. My friends Laura and Debbie were not there. Maybe I will go and play with them. I will never let the twins play with my Barbies again. So there! I felt confused, sad and angry all at once. As a seven year old whose world was turned upside down, I guess I was entitled to be a bit dramatic. On the inside, my fairytale world would never be the same. My innocence was taken away that day on so many levels. What is wrong with my Aunt Jackie? I kept those questions to myself, not asking them out loud to anyone. I tucked them in a place deep in my soul, but the questions were always nagging. I would continue to have many inner conversations trying to figure it out. I needed the wisdom and advice of my Aunt Jackie, but I could not ask. I was specifically told not to say anything to Jackie and the secrets were about her. Does Jackie know she is retarded?