Using Art to Advocate and Empower Parents
Advocacy begins with an assumption that if a number of community members are suffering, then there must be something wrong, not with the individual members, but with the community as a whole; therefore, the community must be changed to help alleviate that suffering (Kahn 1997, 109). Advocacy creates a platform for change by allowing individuals to begin the process of improvement through finding their voice and believing their voice can produce change. Advocacy is essential for parents to address the imbalance of power and control when their child has a disability and the community and schools see their child, not as different, but as deficient. Traditional formats for advocacy have included multiple public discourses. One of the most powerful forms of public discourse for producing change can be achieved through performing arts. This medium transforms feelings, thoughts, and images into aesthetic persuasion that allows participants and audience members to experience a phenomenon in a new way and to ask questions that might not have been asked (Barone, T. & Eisner, E. 2006, 96).
Performing stories has been a means of connecting audiences to lived experiences in the language of ordinary people since the beginning of mankind (Lawrence, R. et. al 2006). Readers’ theatre is “a form of group story-telling in which two of more readers present a piece of literature by reading aloud from hand-held scripts” (Robertson 1990, 2). The strength of a readers’ theatre performance “lies in the transformation of each participant as she or he engages in conversation, reflection, and action in community with others.” (Lawrence, R. et. al 2006). Because the “action” of the story takes place, not on a stage, but in the minds of the audience as enhanced by the vocal and facial expressions of the readers, the staging can be as simple as stools and ladders in a cafeteria, library, or classroom or as elaborate as a stage supplemented by lighting and levels. The “set” then is limited only by each audience member’s imagination. No extensive rehearsal is required, and the performers can be both the actors and the audience. By bringing in audience members to participate, the performance urges a suggested attitude toward the text and effectively advocates for the cause. A “ we” feeling is created.
Readers’ theatre has been used extensively for advocating for various causes, the most popular in recent times has been the Tectonic Theatre’s Laramie Project (Kaufman 2001) about the slaying of a gay student in Wyoming. This play has traveled community and college circuits for the last nine years, converting more dispositions toward tolerance than all the news articles could accomplish. Many other plays for many other social issues have been successful in their advocacy for the people directly involved through discrimination (Knowles, G. & Cole A. 2008, Denzine, N. 2003, Grey, R. & Sinding, C. 2002).
In the following play, “This Exit, No Return,” each parent expresses individually their initial reactions to discovering that their child will grow up differently. They voice their fears, hopes, and dreams as they describe for an audience the frustrations and riches of their lives. The piece is intended to be used by groups to bring awareness to the general public and to teachers and other school personnel of the perception that children with disabilities are unique and whole individuals. While this may seem an unusual medium for advocating for children with disabilities, it has been proven to be very effective. This play has been read in many classes for special education and general education teachers.
Most recently it was read as part of a presentation at the 2009 national convocation for Kappa Delta Pi, an international honorary for teachers. Each time it is performed, the reaction is the same. There are tears of sadness, then joy. This play is intended for parent advocacy groups. It can be used in community meetings to bring a better understanding and respect for all children with disabilities and their families. It is only 20 minutes long and can be performed anywhere. The direct words of parents are the script with minor adjustments for parallelism and logical flow. The words are eloquent and articulate. It speaks directly to and for parents of all children. The parents used in the article are from
Appalachian Ohio and have fewer resources than many families in urban areas. They rarely have been asked to share their stories. They are very generous in sharing their lives with the world.
A Reader’s Theatre, By Joy Cowdery
These are authentic thoughts from parents who have children with disabilities. They have given permission to use their words to tell their stories. I am grateful for their generosity in sharing with us what they want the world to know about their children.
Cast: Susan, Dee, Jim, Beth Ann, Jill, Karen
Dee: Look around. Look at us. Like all parents, we’re here for our kids. But in our world it is sometimes a world of dreams delayed, put on hold or tucked neatly into a metaphorical hope chest. Someday, it won’t be painful to go into that chest. To sort through the “what could have beens” and the rites of passage that never come for our children. Or at least never come in the expected way. It is best not to think of dance recitals, proms, full, flowing wedding gowns, grandchildren. Not now. We’re exhausted thinking about the next prevention. Preventing hurt, preventing harm, preventing chaos.
Sometimes, I cry.
Beth Ann: Sometimes I cry, but, not often. Often there are no tears, just life. Shock, sadness, then life and joy.
Susan: Sometimes I laugh. Sometimes, I brag. It has made me a stronger person and more patient mother. I feel empowered when I see my child doing new things I thought she would never be able to do.
Dee: When I was traveling down the West Virginia Turnpike, I saw the sign “This exit, no return.” I had to smile. I am on that exit now. As I wind down this unknown road I can choose to panic and desperately seek my way back to the freeway, or I can enjoy the view as travel to find a new path.
Jim: The beginning? Wow... that’s always the hardest.
Before entering the NICU, we had to scrub and gown from head to foot. I felt like we were entering into a contaminated area. The nurse led us to Aaron’s glass-walled crib. He was so tiny and frail with respirator tubes and IV lines running from a row of syringes. They were infusing fluid into his transparent body. He had a feeding tube, a heater, monitors constantly beeping, and an oxygen saturation light. They told me his total blood volume was only 5 tablespoons. I spoke his name and at the sound of my voice his eyebrows drew together. “It’s Daddy,” I said, and burst into tears.
Beth Ann: Craven was born four weeks premature. I watched him for developmental milestones daily. Everything seemed to going well for the first five months. All of a sudden, at six months, I noticed that Craven was not cooing or babbling like a typical six-month-old. Of course, my mother and husband thought I was crazy. I was “just looking for something to be wrong.” Just to shut me up, my husband said, “Just go have him tested so you can quit worrying.” I did. Craven was started in speech therapy the next day. At ten months old, my husband and I were told by three therapists that they thought Craven had autism. Now they were telling me that there was something wrong…with Craven… with our genes…with our unborn child I was now carrying. What had I done?
My husband cried immediately, “Not my son. He acts nothing like Rain Man.” Four years into this, my parents and his are still not convinced.
Karen: Our life as we knew it was over. Making adjustments by just having a baby was enough, but talk about overwhelming. I was numb and so was my husband. That first week I didn’t have time to think about much. I was sent home to wait and worry if my son was going to live. I would sit and cry and avoid people. They had said that they could “fix” him once he was born. I just kept thinking, why is God punishing me? What could I have done? So many questions and no answers...Joey is my first and only child. I don’t know what it is like to have a “normal” child. I have never been able to fully enjoy just being a new mom.
Jill: Mason was 15 months old when we received his diagnosis of Angelman syndrome. He was 9 months old when we first knew something wasn’t right. At first, our pediatrician told us to put the baby books away and enjoy him since he was just a “lazy baby” and would catch up soon enough. At 12 months when he wasn’t sitting on his own, we pushed further. His neurologist ordered a battery of tests, all of which came back normal, and then steered us towards physical therapy and early intervention, again all the while assuring us he was just a little on the slow side, but she was sure he would surprise us all and take off. A few months later, I sought genetic testing on my own with a free genetic clinic. The call came one bleak March afternoon. He called my husband and announced that Mason had Angelman syndrome and asked what type of seizure medicine he was on. “Seizures? Angelman?” My husband hung up and called me at work. I headed home and straight for the computer. Reading the information on the Angelman website was like watching a horrible car wreck in slow motion. I felt like I had a boulder sitting in the pit of my stomach. I stood up from the computer ready to vomit... My husband grabbed me crying and we clung together sobbing without knowing what to say.
Beth Ann: On the very day we brought our second son, Coe, home from the hospital, we saw the neurologist for the first time to talk about Craven. It was official. It was the A word. But very mild, we were told. I didn’t care how mild it was - my child had just been diagnosed “less than perfect.” Was it me? Was it the vaccinations? Does it matter? Not really. My son has autism and I have to help him.
Jill: I stayed in the guest bedroom for a week, crying for what Mason would miss.
Flowers and cards poured in from relatives as if there had been a death in the family. A death to the dreams of the typical child we thought we’d given birth to. Then one day out of the blue I looked down at Mason and he smiled up at me in the same sweet way he always does and I realized he was not dead. He was right in front of me, smiling, no matter what label had just been slapped on him. So that day I wiped my tears and started to get back to my life and create new or different dreams for myself and Mason.
Jim: Yes, there are challenges. Aaron will never speak, throw a ball with his brother, tell me where it hurts, use a spoon, or run through the grass on a summer’s day. Only thinking of the challenges can make you bitter.
Dee: Chloe can be difficult. She never wants to come inside. Everyday when she gets out of the car from school, she throws herself on the ground, stiffens her body, and screams for hours. The neighbors are used to it and now realize no one is killing her. Every morning at school, the teachers are going through the same thing.
Beth Ann: Challenges? Well, beyond the obvious, we are poor. We are tired. Our family vacations revolve around whatever city the new doctor is in. I just wish we could find a DAN (Defeat Autism Now) doctor at a beach.
Jill: Challenges? The future. I will never hear him say “I love you, Mommy” or dance at his wedding, but I will delight in the huge moments of seeing him walk for the first time, clap his hands together on purpose or even be seizure free for a year. And although I may not ever hear with my ears, I will hear with my heart daily, just how much he loves me.
Karen: Joey is the first special needs child on both sides of our family, so no one knows what to think or do. They feel helpless because they don’t know what we are going through and keep telling us he will be fine. They couldn’t be more wrong, of course. They can’t understand why I just can’t pick up and go on with my life as before. How keeping Joey happy and content makes my life more bearable. No one knows what it is like until they have a child with special needs. Even then, each family, each person has their own “special needs.” Like all families, each situation is a different situation.
Beth Ann: I used to say I would never leave my kid with a babysitter until he was able to talk and tell me what had gone on in my absence (resigned laugh). What a twist of fate.
Craven will never talk. We cannot have the “kid next door” babysit. He takes 34 pills, 2 tea- spoons, 1 spray, and a shot each day. Who but us can watch him? But despite the expensive food, natural medications, private therapy sessions, in the end we would not have it any other way. Craven is a happy go lucky kind of kid. He loves to be outside playing in the dirt, grass, and water. Those moments are precious.
Karen: Too many people just pity us. I have learned to be patient in this game of life.
When people stand in the way of Joey getting the services he needs, I can do nothing but wait. But sometimes, I just jump the wall to get to the other side, ignoring the naysayers, and every time I do I feel a little stronger. You have to pick your battles, conquer the ones most important and leave the rest for later. It is like cutting brush, you have to start cutting where you see you can and work your way into the middle otherwise you get tangled in the briers and they pull you down and you see no way out. Sometimes I get angry. When I hear parents of typical children complain, I get angry. They should be glad their children are growing up and on; they should make the most of the time they have with their child. For me, I am elated in any little thing mine does. I have learned to appreciate what is really important in life and see the beauty in everything.
Susan: When our triplets were born in 1994, my twins survived, their brother did not. Madison is delayed, but Allison only has mild cerebral palsy. Considering their rocky start, both girls are doing well. My youngest is seven and blind. Yesterday, she announced that she wanted to be an artist. My first reaction was heart stopping. How can I tell her she cannot paint? Then it struck me, not all artists are painters, and why not? Why shouldn’t she dream of being an artist or whatever else she chooses? My daughter, the artist!
Jill: Oh, Mason.... No matter if I’m ready to lose it after hours without sleep, or you won’t stop banging on the windows making the whole house shake, or turning the TV on and off, or painting my kitchen with food… it all melts away when I catch you smiling at a bug on the window sill, and I ask you for a kiss.
Dee: Chloe can be sweet. She looks like an angel. She is truly a beautiful child with big brown eyes and the cutest mouth. She will smile forgivingly at nurses poking her arm for blood. She knows no hate, no jealousy, war, prejudice, and for this I am envious.
Susan: Things eventually get better. Soon the roller coaster ride you’re experiencing will turn into an easygoing merry-go-round. All children are individuals with their own pace and timeline. I’ve learned to relax about life.
Jim: Aaron truly lights up a room with his smile. He has a magical quality about him and people are drawn to him if they can get past his physical differences. That’s all it takes. Look at the person, not the disability.
Karen: Joey is a very loving and caring child like most children with special needs. He doesn’t ask for much, only to be loved and taken care of.
Jill: I remember looking back to before I had children when I wrote in my journal that
I didn’t know if I was ready to have kids and take on the responsibility of someone else’s life. Well, here he is and what a distance I have come. I am not only responsible for his life now, but setting up for his life after I am gone. Like all children, I will never stop fretting over him, but this responsibility continues after my life.
Susan: Having a child with special needs means that she isn’t just your child. More than most parents we have to be involved with professionals from day one. First it is the medical profession and then the education system. Having so many “experts” telling you so many things that can contradict one another is exhausting. Honestly, sometimes as parents we just go with the person who seems to care the most and trust them.
Karen: Even professionals don’t know everything. I feel like I am going for an interview every time I go to an appointment. Even with endless list of symptoms and questions, I can end up with no answers. I’ve learned that I will not accept “I don’t know” from a doctor. I will keep getting referrals until I find someone who does. I will also never let a doctor set limitations for my child. Every child is unique in learning and developing and no one can predict the future.
Jim: Sometimes even the people you expect to understand are without a clue. One doctor told us as our son was hospitalized with horrible seizures that basically all children with syndromes are living miscarriages...my son does not have a voice and I am making it my life’s mission to know his syndrome so that I can question, comment, complain, ask, and tell for him to anyone who will listen. If they don’t, I will move on to someone who will. I am proud of my son. He is a bright child without a way to communicate that to people. He is yelling in a soundproof room. I admire his attempts to communicate and reach out to a world that sometimes doesn’t reach back.
Beth Ann: Sometimes you have to fight. School can be a battle zone. Once Craven “aged out” and became the responsibility of the public school system, we had to educate ourselves, and them. Having been involved with special education for so many years, I thought I would know the ins and outs. Well, I’m on the other side now. I’m fighting for my own kid.
Jill: School has always been a challenge. I want Mason’s teachers to know his name, strengths, abilities, hopes and dreams, and not just his diagnosis. I want people to know that their words, attitudes, and actions impact his life more than his disability. He has dreams, too…work at knowing them, knowing him for him, listen to him with your hearts. Don’t pity him; celebrate the truly magnificent child he is.
Karen: Professionals, yeah, well… they only know what books tell them, and my son, at least, didn’t come with an owner’s manual. I find myself observing other children and realizing we all do things in our own unique way. So what if my child learns in a different way. Who is to say what is the right way? Who are we to judge? If my child is happy and healthy, isn’t he successful? How should we measure success except by those criteria?
Susan: All teachers need to know that having a child with a disability is like having a child. The concerns may be directed differently to keep your child from being limited by artificial barriers, but the concerns that all parents have for their children are the same. I want my daughter to be healthy, happy, and successful. Period.
Beth Ann: I just want to say to all teachers: “As parents, we did not choose to have children with disabilities. As teachers, you chose your profession and as such, chose to teach all children. When you have a bad day at school, remember, you go home at the end of the day and weekends. When I have a bad day at home, I can’t call you to come and pick him up. So try to remember to work with me, not against me.”
Jill: I did not choose this bumpy road, nor at times do I enjoy it. I have even cursed God too many times to count. If I could make my son understand just one thing, this is what I would say to him, “You are my son and you are not disabled, but differently-abled. At the end of the day when I peek in on you and I hear your soft breathing and smell your sweet smell as I inhale deeply and thank God for giving me such a complete child who is closer to Him than any other person I know. You are a gift. I have never looked in another human being’s eyes but yours and seen nothing but innocence and pure love.” For everyone else, don’t pity my son. Help me celebrate the truly magnificent child he is and the wonderful adult he will become. One of my favorite sayings is this, “I thought I would have to teach my son about the world, it turns out I have to teach the world about my son. They see a boy who doesn’t speak, I see a miracle who doesn’t need words.”
Karen: All in all, things have a way of working out in the end, maybe not just the way I wanted the road to go or as quickly as I hoped to get there. In life, you just have to accept that there are some things you can change and some you have absolutely no control over. Just knowing I have done my best and fought for my son, I have peace with myself. Yeah, some- times I smile.
This play is dedicated to The Washington County Board of Developmental Disabilities. A special thanks to Ms. Ginger O’Conner, Director of Early Childhood Therapy. A thank you and recognition of the strength of the parent participants who loaned their feelings and voice to this project: Jill, Karen, Beth Ann and others who wish to remain anonymous.
About the author: Joy Cowdery is an Associate Professorand Chair of Education at MuskingumCollege in New Concord, Ohio. Sheholds an Ed.D. in EducationalLeadership/Critical Pedagogy and anMA in Communication from WestVirginia University and a BA in English,
Speech, and Drama from Marietta College. She coordinates the diversity program and teaches Diversity Education at Muskingum College. Cowdery is co-author of a textbook,
Building on Student Diversity: Profiles and Activities, Sage Publishers (2007), which explores the case studies of sixstudents with high incident disabilities. Her husband is visually impaired and they advocate for people with disabilities in the workplace.
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