PLAYING WITH PERFORMANCE: HOW THEATRE BRINGS CREATIVITY, COMMUNICATION, AND EMPOWERMENT TO CHILDREN FACING HOSPITALIZATION AND LIFE CHANGING DISORDERS
Jennifer Ann Faller B.A., College of Notre Dame, Belmont, 2000
THESIS
Submitted in partial satisfaction of the requirements for the degree of
MASTER OF ARTS
in
THEATER ARTS
at
CALIFORNIA STATE UNIVERSITY, SACRAMENTO
SPRING 2010
PLAYING WITH PERFORMANCE: HOW THEATRE BRINGS CREATIVITY, COMMUNICATION, AND EMPOWERMENT TO CHILDREN FACING HOSPITALIZATION AND LIFE CHANGING DISORDERS
A Thesis
by
Jennifer Ann Faller
Approved by:
______, Committee Chair Melinda Wilson, Ph.D.
______, Second Reader Linda Goodrich, Ph.D.
______Date
ii
Student: Jennifer Ann Faller
I certify that this student has met the requirements for format contained in the University format manual, and that this thesis is suitable for shelving in the Library and credit is to be awarded for the thesis.
______, Graduate Coordinator ______Melinda Wilson, Ph.D. Date
Department of Theatre and Dance
iii
Abstract
of
PLAYING WITH PERFORMANCE: HOW THEATRE BRINGS CREATIVITY, COMMUNICATION, AND EMPOWERMENT TO CHILDREN FACING HOSPITALIZATION AND LIFE CHANGING DISORDERS
by
Jennifer Ann Faller
This thesis traces the presence of theatre’s involvement in the lives of children facing long-term hospitalization as well as children diagnosed with Autism, a neurological disorder affecting socialization skills. Theatre’s involvement begins in the hospital, through the unconscious use of theatrical elements brought to children by child life specialists and continues through the consciously used element of performance by hospital clowns used to empower hospitalized children. Also examined is the play, This is a Test: One Girl’s Fight with Cancer, written by twelve-year-old Shenita Peterson, about her battle with cancer and hospitalization experience. Her play lived a life of multiple performances in the Chicago area including one performed in a teaching hospital for medical students. This case study shows how theatre not only entertains, it is a teaching tool. The final relationship explored is the one between theatre and autistic children. I discovered that theatre has maintained a strong presence in the autistic community through different kinds of therapy used to help teach children with ASD how to communicate and recognize emotion. Like the relationship between theatre and the
iv hospital setting, autistic theatre has not always been a conscious one. The final chapter traces the relationship from unconscious to conscious.
______, Committee Chair Melinda Wilson, Ph.D.
______Date
v
ACKNOWLEDGEMENTS
I would like to take this time to thank Shenita Peterson for taking the time to answer all of my questions regarding her play, This is a Test: One Girl’s Fight with
Cancer. I would also like to thank Ewing Eugene Baldwin for taking the time to give several insights to Shenita’s experiences through both the hospital and writing process.
vi
TABLE OF CONTENTS
Page
Acknowledgements….……………………………………………………………………vi
List of Figures…………………………………………………………………………...viii
Chapter
1. THE INTRODUCTION OF PLAY AND PERFORMANCE....………………….1
2. BRINGING PLAY INTO THE HOSPITAL: TRACKING THE PRESENCE OF THEATRE IN A CHILD’S HOSPITAL EXPERIENCE .…………...…...………9
3. THEATRE AS AN EDUCATIONAL TOOL: HOW HUMOR, INTELLECT, AND ONE GIRL’S FIGHT WITH CANCER TAUGHT OTHERS COMPASSION…………………….………………………………...………..…35
4. “AUTISTIC THEATRE”: THE PAST, PRESENT, AND FUTURE RELATIONSHIP BETWEEN THEATRE AND AUTISM…………………..…57
5. CONCLUSION ………………………………………………………………….90
Works Cited……………………………………………………………………………...96
vii
LIST OF FIGURES
Page
1. Figure 1 Automatic Thinking versus Coping Thoughts...………………………64
viii
1
Chapter 1
THE INTRODUCTION OF PLAY AND PERFORMANCE
Creativity, self confidence, and communication are crucial to children‘s growth and development. This thesis examines how theatre helps incorporate these elements into the lives of children facing hospitalization and/or long term disorders, primarily autism.
For these children, creativity and self confidence disappear while fear, sadness, and the loss of self-expression replace them. In order to combat these negative effects, children need to have an outlet to release their feelings. Direct and indirect forms of theatre used in various forms of therapy create such an outlet. According to the California
Department of Education, participation in performing arts ―employs a form of thinking and a way of knowing based on human judgment, invention, and imagination‖ (California
State Board of Education ix). This means that active participation in theatre allows children to learn socialization skills as well as develop deductive reasoning through a creative process. Not only does theatre help with socialization, it helps develop a strong sense of self and confidence that children take with them into adulthood.
When children enter the hospital because of illness, or are diagnosed with autism, there is a shift in what becomes important to the adults responsible for them. The adults, including parents, doctors, and therapists, are no longer concerned with the extracurricular of life, but rather, the immediate dangers the diagnosis brings forth. For hospitalized children this means procedures, hospital stays, and recovery; for children diagnosed with autism, simple tasks such as developing normal friendships become 2
serious obstacles.1 As a result, they lose their sense of control because they no longer have a part in decisions made regarding their bodies. This leads to a breakdown of communication between children and adults, as children do not feel comfortable voicing their concerns. This lack of comfort regarding communication leads to a negative self view, resulting in children becoming depressed. The introduction of theatre in this environment allows children to express themselves through play while promoting normal development and rebuilding communication between children and adults.
Theatre began as a way to communicate information and has come full circle with regard to its relationship with children. When theatrical performances progressed into a form of entertainment, the goal shifted from being informative to creating an emotional response prompting social change. The role of actors became similar to that of a newscaster, or a liaison between the general community and the opinionated writers. The actor‘s job was to communicate to the audience a specific point of view, be it positive or negative. This history of communication sets up the relationship theatre develops with children. When children become involved in performing, be it directly or indirectly, they become the author, director, and actor sharing their point of view. This allows them to control the information given and the manner in which it is revealed. As theatre started out as a form of communication, by providing information to the public, it continues this role in the lives of hospitalized children and/or children facing long term disorders. It not
1 Autism, once categorized as a psychological disease akin to schizophrenia, is a neurological disorder that affects the way the brain processes information. Autistic children struggle with, among other things, understanding emotions that lead to difficulties developing and maintaining social skills. 3
only becomes a vehicle for communication, it boosts children‘s confidence, and reinstates the normalcy of ―playing.‖ To most children participating in such theatrical forms as role-playing, dress-up, and puppetry ―playing‖ comes naturally, for they are just playing make-believe. To adults watching, this form of play demonstrates children‘s need to experiment with and test out social roles. For this reason, the flexibility of ―play‖ is closely aligned with theatre and redefines itself based on the context of the situation.
Throughout this thesis the word ―play‖ is redefined based on the needs of each chapter. Play finds itself closely aligned to theatre based on the innate natures of imagination and pretend, which are used in both natural, imaginative play and theatrical performance. The most basic definition of ―play‖ is ―recreational activity‖ (Merriam-
Webster 262). When one thinks of children playing, the image of playgrounds, laughter, toys, and dress-up boxes come to mind. Through these recreational activities, children learn and test out skills such as communication, community roles, and social etiquette while encouraging and promoting their developmental growth and imagination. When children play they act out different people they have seen, heard, or read about as a way to explore personal boundaries and develop their own sense of self. They are also testing their social boundaries and learning how to develop and maintain friendships. Clearly playing involves more than simply participating in a ―recreational activity.‖ In theatre, the term ―play‖ has dual meanings as: 1.) a piece of literature written with the intent of being performed on stage, and 2.) actors bringing forth the written story through the portrayal of different characters. For hospitalized children, imaginative play, or the natural instinct to pretend, becomes a way to express emotions freely as they become lost 4
in the moment and may not realize the amount of information being revealed. For children with autism, the basic idea of imaginative play is a foreign and confusing concept, as they do not understand what an imagination is. Theatre teaches the idea of imagination and how it can be used to communicate with others. Together, theatre and play bring creativity, communication, and empowerment to children by providing a platform to comfortably test new roles and characters, while promoting the expression of emotions.
This thesis examines several case studies that use both indirect and direct forms of theatre in children‘s hospitals and therapies. Each chapter focuses on either the hospitalization experience or a life altering disorder affecting children. Through my research I discovered that theatre has remained predominant in the lives of children in both unconscious and conscious ways. When I read the play This is a Test: One Girl’s
Fight with Cancer, written by twelve-year-old Shenita Peterson, I realized the beginning of what was a very important relationship between theatre and hospitalized children; theatre as a tool of confidence and communication. As a theatre teacher, I have witnessed first-hand how participation in theatre programs helps typical children view themselves in a positive light; and Shenita‘s play showed me another side of theatre. Not only did writing the play have a positive effect on Shenita, it was published in Literature and Medicine by the Johns Hopkins University Press, a highly regarded medical journal.
This demonstrates the communicative power theatre has between children and adults.
Her play began as a school project to help her cope with her emotions and went on to be performed in several locations, including a training hospital. This led to research 5
regarding activities currently offered to children in hospitals and I found that while music and arts and crafts are consistently offered, there are no specific theatre based programs.
I discovered the child life specialist, a job created specifically to promote normalcy in the hospital experience, who use theatre in indirect ways and have been for several years.
Outside of the hospital, there are several theatre companies that have recently started performance based programs for autistic children. I traced the history of therapy for autism and linked the use of indirect theatre to teach socialization, emotional recognition, and communication for quite some time. I contend that theatre functions as more than entertainment for children, it promotes communication between children and adults as well as the opportunity to show society the normalcy of children deemed
―different.‖
Chapter two traces how theatre‘s presence, whether indirect or direct, has had a positive and creative impact on the way children view themselves. It discusses the relationship among child life specialists, hospital clowns, and theatre. Child life specialists, a relatively new addition to children‘s hospital life, help maintain a sense of normalcy throughout the hospital experience. They are responsible for creating and implementing educational activities for the children, most of which are indirectly based on theatre. Clowns have a long and rich history of entertaining as well as being healers in some Native American cultures. This history allowed for the creation of a new form of clowning, the hospital clown. When entering the hospital they do more than entertain; they allow children to make decisions for themselves resulting in a boost in their self- esteem. I believe that theatre‘s involvement in the hospital experience has had a positive 6
impact on children for as long as hospital clowns and child life specialists have been employed.
Chapter three centers around Shenita Peterson, a twelve-year-old girl battling cancer, who had a negative hospital experience. She had a difficult time communicating with her doctors who treated her like ―meat‖ rather than an actual person. Upon her return to school, her drama teacher, Ewing Eugene Baldwin, convinced her to write a play about her hospital experience as a way to share her story with others. With the help of her classmates and teacher, the play This is a Test: One Girl’s Fight with Cancer, was written. Her play was performed several times in different venues, including one in front of medical students at a university in order to teach empathy for young patients. Here the conscious use of theatre allows a young girl‘s voice to be heard. In Shenita‘s case, the word ―play‖ holds a double meaning. She was able to creatively play through her writing and creation of characters to express her true feelings about her experience. She also created a play, a piece of literature that would be published in a medical journal for others to read. She used theatre directly to communicate to adults, particularly the doctors, interns, and hospital staff she encountered, how she felt about her experience. Her play showed future doctors exactly how their actions might affect their young patients, and more importantly, why they should not forget they are treating a young person, not just a disease. The performance of Shenita‘s play became a forum for communication among children, adults, and their emotions. Here, theatre taught others to listen while giving a voice to one that had been lost. 7
Chapter three takes theatre out of the hospital and into a classroom environment to teach autistic children what it means to play and how to recognize emotion. Autism, a neurological disorder, prevents children from understanding emotions and deviations from what they consider to be strict rules and regulations. It presents unique problems for developing children preparing to enter school as they tend to speak very bluntly and have difficulties engaging in conversations with others. Autistic children also have a hard time socializing due to a lack of imagination; they literally do not know what play is or why other children ―pretend.‖ Theatre has found a special niche in the autistic community by giving children a way to understand social etiquette while teaching them how to recognize the basics of emotions through character development and role-playing.
Through these techniques, autistic children learn what emotions are, how they manifest through words and gestures, and how to react to other‘s feelings. Role-play using a script specifically puts autistic children into the shoes of another character which shows them exactly what to do and how to react through stage directions. As a result, children with autism have been able to show that they are capable of understanding emotion and effectively communicate with others. This empowers autistic children to move forward into a new realm of life they have never understood or have been too afraid to enter, including participation in a live performance on stage which I call, ―autistic theatre.‖
They have proven themselves to be capable of not only participating in theatrical performances, but also being a part of the creative writing process. This thesis shows the evolution leading up to autistic theatre and the next logical step theatre performance and 8
play should take to bring together a creative self, communication, and the empowerment of the child to teach empathy and compassion to everyone around them.
9
Chapter 2
BRINGING PLAY INTO THE HOSPITAL: TRACKING THE PRESENCE OF THEATRE IN A CHILD‘S HOSPITAL EXPERIENCE
We wanted to make medicine human. Where are we most human? In friendship . . . ~Patch Adams, www.patchadams.org
Traditionally, the word ―theatre‖ brings to mind images of a brightly lit stage, actors dressed in costumes, and the sound of applause. The word ―hospital‖ brings images of doctors, operating rooms, medication, and the beeping of machines. The two images do not seem to go hand-in-hand, especially for children facing life-threatening illnesses. However, I believe that theatre has been present in the hospital experience for children for many years in both indirect and direct forms. Indirect forms of theatre include using puppetry, role-play, and rehearsal in a nontheatrical, unconscious, performance setting. In other words, the goal is not to perform a show, but rather to encourage children to reveal their emotions through natural play. Direct forms of theatre include the conscious decision to bring performance into the hospital through hospital clowns, resulting in a shared theatre experience. The difference between the two is a matter of an unconscious versus conscious decision to incorporate theatrical forms into activities. Child life specialists, employees of the hospital who help children through their hospitalization experience, use theatre in an indirect, unconscious manner to elicit information from children regarding their feelings, not to create a performance. Hospital clowns use theatre in a direct, conscious manner, namely through performance, to bring 10
laughter, fun, and a sense of empowerment to the young patients. Both methods produce the same result: a positive boost in children‘s self esteem through creativity, imagination, and performance.
A theatrical performance in a traditional theater includes actors transforming themselves into a character in order to present a story for an audience. To accomplish this, an actor learns how to become another person, and shows a variety of emotions through facial expressions and body gestures. They must use their imagination and creativity to open themselves to a new experience which includes performing situations vastly different from their everyday lives. For this reason, children rather than adults are more accessible to the fantastical nature of performance while in the hospital setting.
Children are more apt to be able to remove themselves mentally from the hospital situation and transcend into a make-believe world, whereas adults find it difficult and nearly impossible to escape the reality of their situation. Children, even ones facing life- threatening illness, cling to their innocence and imagination, which allows a space for theatre to enter. Most activities for children involve creativity, imagination, and even character development through the natural progression of play.
Children begin playing in infancy by exploring their five senses of taste, touch, sight, smell, and hearing. For an infant, playing with a variety of toys and textures gives them knowledge regarding their surroundings. As children grow and develop, play becomes more complex. For the purpose of this chapter, I define play as an enjoyable, 11
spontaneous, voluntary engagement with no particular goal in mind (Thompson np).2
This form of play comes naturally to children as it is simply fun and there is no hidden agenda. Children also learn socialization skills through playing and interacting with others by recreating situations they see throughout their lives (i.e. jobs of parents, going to the grocery store, learning what school is, etc.). In a hospital setting, play helps maintain normal growth and development while teaching and sharing information specific to children‘s needs. Theatre fits inherently into this situation because the nature of play is to imagine, create, and rehearse the character of another person. For example, when a child pretends to be a teacher using their stuffed animals as students, they learn how to communicate information to others. In Child Life in Hospitals: Theory and
Practice, Thompson writes, ―Play facilitates the child‘s self-expression and provides a mechanism for coping with difficulties. Play allows a child to become an active participant, rather than the passive receiver so often the norm in a hospital experience‖
(Thompson 62). The term ―active participant‖ demonstrates the emergence of theatre within the hospital as the child becomes actively involved in play instead of being removed from what happens regarding the treatment of his body. This involvement often means becoming an imagined character in a developing story line whether consciously performing or not. By incorporating various theatrical forms into the act of ―play,‖ children change from inactive participants to feeling empowered to take back some
2 This definition of play was created by combining several different definitions found in Richard H. Thompson‘s book, Child Life in Hospitals: Theory and Practice. 12
control of their situation. For most hospitalized children, play emerges through activities introduced by child life specialists and hospital clowns.
This chapter considers the history and relationship among child life specialists, hospital clowns, and the indirect and direct presence of theatre in hospital settings for children. Theatre‘s presence in the hospital creates a safe space for children to allow themselves to be comfortable enough to share their emotions with adults. The relationship between children and theatre begins with the various forms of play performed between a child life specialist and children, including conversational puppetry and ―medical play.‖ The activities introduced stem from ―therapeutic play‖, a specific type of play used to promote the emotional well-being of children in difficult situations.
Each form of play, be it natural or medically based, serve the common goals of empowering children to communicate their feelings, whether conscious or not, to adults.
While the child life specialist indirectly uses theatre, hospital clowns incorporate children into their performances and use theatre directly to help them feel empowered and in control regardless of how decisions about their care and treatment are made. I contend theatre, whether indirectly or directly used, maintains itself as a vehicle for communication between children and adults as it creates a safe and familiar environment in which both participate. I also believe theatre‘s presence can be pushed further into the creation of a conscious performance in which all children can participate, no matter what physical barriers they face, as a way of sharing their hospital experience with others.
Theatre lends itself to the exploration and explanation of the emotional roller coaster children ride while in the hospital by allowing them to share their stories without 13
judgment in a comfortable, contained environment. Much like entering a theater to view a play, hospitals can create their own theater of performance to share and comfort all those who enter.
INDIRECT PERFORMANCE AND THE CHILD LIFE SPECIALIST
In addition to receiving specific training to work in the hospital, most child life specialists in hospitals today have a degree in Child Development or Education. After completing the coursework and training, they must pass an examination and complete over 400 hours of work in hospitals in order to become a licensed specialist. In the hospital, a child life specialist‘s job is to ―help the child cope with stress and anxiety of the hospital experience [and] to promote the child‘s normal growth and development‖
(Thompson 7). Child life specialists were first introduced in hospitals in the 1920‘s as a way to create a better hospital experience, but they were not considered a crucial factor in children‘s treatment. In the 1950‘s, Emma N. Plank, an assistant professor of Child
Development in the School of Medicine at Western Reserve University in Cleveland,
Ohio, began gaining recognition for her work with children, specifically those in the hospital (Thompson 6). She pioneered the movement to create a child life specialist by bringing activities children would normally participate in at home, to the hospital. What began from her love of children blossomed into the creation of specific programs to be implemented in children‘s hospitals. In 1955 Dr. Fredrick C. Robbins, a professor of
Pediatrics and Contagious Diseases at the same university, invited Plank to join the pediatrics department of the City Hospital in Cleveland, to address the ―educational, 14
social, and psychological needs of children receiving long-term care‖
(www.metrohealth.org). There Plank designed and implemented the Child Life and
Education program, including the role of ―child-care worker,‖ where she served as director until 1972 (www.metrohealth.org).
Plank‘s program, the first of its kind, demonstrated a way to make the hospital experience more enjoyable for children by bringing in activities such as cooking, arts and crafts, and games. Plank personally believed, ―when a child is hospitalized, the hospital has to take on tasks beyond its healing function, tasks which must be accomplished so the rhythm of life and growth can go on‖ (www.metrohealth.org). Plank‘s determination to maintain a sense of normalcy began the indirect relationship between hospitalized children and theatre. When performing the aforementioned activities, children create a new environment for themselves. They are no longer patients in a hospital, but rather chefs cooking delicious treats, artists painting a masterpiece, or animals playing tag.
Neither Plank nor the children realized it at the time, but they were unconsciously paving the way for theatre to become a predominant factor in maintaining normal emotional growth and development.
From the work of Plank and others the term, ―child life specialist‖ became official when the ―Child Life Council‖ (CLC) was established in 1982 with the goal of
―providing play, preparation and educational programs‖ for children in hospitals
(www.childlife.org). The CLC monitors programs that individual child life specialists create as well as provides a forum to share information. According to the American
Academy for Pediatrics, ―an effective child life program provides developmentally 15
appropriate play, offers informative and reassuring psychological preparation before and during procedures and helps children plan and rehearse coping skills‖ (Child Life
Services 1758). In other words, the activities implemented by a child life specialist must stem from children‘s natural ability to learn through play. In order to foster this, the child life specialist uses specifically designed methods of play, including ―therapeutic play‖ and ―medical play‖ to encourage children to explore and understand their emotions, as well as what hospitalization entails. These methods of play indirectly introduce theatre through the creation of characters, a major part of a child‘s play experience. When children participate in an activity involving their imagination, they begin to create a place outside the realm of their reality to exist in. This imaginary world is similar to the one an actor creates while performing a play. Both worlds, whether created by a child or an actor, stem from the creator‘s point of view, their personal truth. For the actor, the point of view is a combination of his character development, the author‘s written word, and the show‘s director. For the hospitalized child, the point of view is based largely on the emotions of entering an unfamiliar environment and the fear that comes with it.
Therefore, when a child life specialist brings in specific forms of play, she is helping to create a performance with the children.3
In order to understand why theatre fits into the hospitalized child‘s world so easily, ―therapeutic play,‖ must be examined and defined. I believe it is here that theatre‘s relationship with the hospitalized child becomes predominant. The CLC defines
3 Throughout this thesis I refer to a child life specialist as ―she‖ because women are dominate in this field of work. 16
therapeutic play as ―specialized activities that are developmentally supportive and facilitate the emotional well-being of a pediatric patient‖ which differs from traditional play therapy by focusing on creating a sense of normalcy while fostering natural development (Koller 3, italics in original). ―Play therapy‖ primarily used to help a child through a traumatic event caters to specific developmental stunting. Diane Koller, a member of the CLC and a clinical specialist in child life, states that therapeutic play consists primarily of three types of activities:
1) The encouragement of emotional expression (e.g. re-enactment of
experiences through doll play)
2) Instructional play to educate children about medical experiences
3) Physiologically enhancing play (e.g. blowing bubbles to improve
breathing). (Koller 4)
Each form of play serves a purpose, including eliciting information regarding emotional states, introducing and rehearsing procedures, or stimulating the imagination while working on physical therapy. These activities, including storytelling through puppets and
―medical play,‖ align themselves directly with theatre by creating characters children use to communicate their feelings and/or rehearse medical procedures. These two activities strongly demonstrate the unconscious relationship between theatre and hospitalized children.
In the hospital, storytelling comes in the form of what I call ―conversational puppetry,‖ which occurs when children use puppets to create both simple and elaborate storylines that unconsciously reflect their emotional state of being. Storytelling, a word 17
with many definitions, accomplishes two goals concerning hospitalized children: 1.) it elicits information regarding the child‘s emotional state and 2.) it stimulates creativity.
When children are admitted into the hospital for treatment and/or surgery, they face many fears because they are in an unfamiliar environment with unfamiliar people. The child life specialist enters to become the child‘s friend, confidant, and often times, a liaison between him and his family.4 Children often become reluctant to discuss their private emotions during their time in the hospital due to their level of discomfort with their surroundings. The child life specialist brings in puppets to help create a comfortable atmosphere for children to explore the depths of their emotions. When children take on the role of ―puppeteer,‖ they remove themselves from their situation and become characters in a story. The ―story‖ they create begins the conversation with the child life specialist. This conversation becomes an act of performance for children even if they are only interacting with the child life specialist; one person can be an ample audience for any child. The child life specialist intends to elicit information in order to determine how best to treat children‘s developmental needs, and not to create a performance. Regardless of the intent, the act of using a puppet to have a conversation, or tell a story, does in fact become a performance. Performance does not have to take place on a traditional proscenium stage, it happens any time a person takes on the role of ―other‖ or character, and there is an audience, no matter how large, there to witness it. This act of indirect
4 Child life specialists are allowed into areas of the hospital the family is not (i.e. an operating room). 18
performance with puppets validates the relationship between hospitalized children and theatre.
As actors communicate their characters‘ stories on stage, children use creative devices such as puppetry to communicate their personal stories from a hospital bed. For that small moment when children talk through a puppet, they have become a character.
They have stepped outside of themselves unconsciously and become a new person.
During this performance, they unknowingly communicate their feelings to others. For the child, it is pretend. For the adult listening in the role of audience member, it is a learning experience. For example, Thompson wrote a story regarding ―Stephanie,‖ a child life specialist, and ―David‖ a young burn victim. David was reluctant to talk to anyone about his feelings when Stephanie noticed he had a stuffed dog with him. Instead of directing questions to David, she directed them to his dog, ―Scruffy.‖ Scruffy shared that he, ―felt bad about being in the hospital, he missed his mother, and he hated the shots‖ (Thompson 12). David relayed crucial information to Stephanie regarding his emotional state through the screen of a puppet, his stuffed dog, a reminder of home. In that moment, Scruffy became the conduit of information. He was familiar to David, his special friend from home that could comfort him when nothing else would. Using
Scruffy to talk allowed David to create a comfortable distance between him and
Stephanie which helped him perform his emotions and tell many more stories containing
―themes of separation from family and fear of painful procedures‖ (Thompson 13).
Having received this information, Stephanie was able to form a plan regarding activities 19
that would comfort David during his hospital stay including bringing his family in more often to visit.
Theatrically speaking, conversational puppetry uses imagination, performance, and the roles of actor, director, and audience member. Children become actors creating a safe world to explore emotions while learning how to cope with their illness. The child life specialist unconsciously steps into the role of director by encouraging and directing the story into a positive experience for children. She also becomes the audience, there to witness the journey of the imagination while providing appropriate reactions the children need to reinforce their positive sense of self. As a result, children become empowered to take control of the path and direction of their story. In the case of Stephanie and David,
Stephanie asked ―Scruffy‖ questions regarding his feelings to determine David‘s true state of emotions. Without this use of theatrical elements, children would remain trapped with their fears due to a lack of creativity. Children need to create, imagine, and pretend.
It is through natural play that they grow and develop the personalities they take into adulthood. When natural play is removed, theatre enters to fill the void. Play through theatre, such as conversational puppetry, becomes a performance of emotions needed by children. It is also through play, specifically ―medical play,‖ that children have the opportunity to become the character of doctor to explore and understand the medical procedures they may face.
When a child life specialist needs to explain a procedure or help a child cope with the healing process, she introduces ―medical play.‖ Medical play is defined as ―a form of play that always has as part of its content medical themes and/or the use of medical 20
equipment‖ (McCue 158). It stems from therapeutic play, as it naturally fosters children‘s innate ability to play while maintaining the very specific goal of providing information. Medical play begins with the introduction to a handmade doll or puppet.
There are two kinds of dolls used in medical play: 1.) a plain doll given to children to keep permanently which they may decorate and personalize and 2.) a specifically designed puppet that demonstrates various procedures and surgeries. Medical puppets can be up to thirty-two inches tall, anatomically correct, and have removable organs specific to various forms of surgeries (www.patientpuppets.mb.ca). Due to the cost, over six hundred dollars each, medical puppets are used under the guidance of child life specialists and remain in the hospital. A child life specialist may choose to bring in one or both kinds of dolls to children in order to demonstrate procedures and allow children to become familiar with situations they face. Role-play begins with the child life specialist becoming the ―doctor‖ demonstrating what exactly happens during procedures and how equipment will be used. The play moves into the children‘s hands by encouraging them to become the doctor and perform the procedure on the doll(s). The use of real medical instruments (i.e. syringes, tubing, surgical masks, etc.) gives children the opportunity to see and feel how it works, while helping to combat fear and provide coping mechanisms for their treatment. This combination of role-play, dolls, and instruments provides a rehearsal for children while allowing them to actively take control of their situations by ―performing‖ the procedure. As a ―doctor,‖ children remove themselves from the situation and observe it objectively. They begin to comprehend what happens when the situation is reversed and they become the patient once again. 21
Similar to the conversational puppetry technique, this use of dolls creates a non- threatening, objective environment in which the child can learn. The benefits for the child include the reduction of stress, resolution of problems, as well as the practicing of coping behaviors, or learning how to deal with his situation (McCue 158).
Creatively speaking, medical play aligns itself with theatre by creating a setting, characters, and a rehearsal process. The hospital room transforms into an operating room where the child becomes an actor performing the role of ―surgeon.‖5 The role of the child life specialist once again becomes director, as she maintains the flow of play while introducing the child to the proper terms and use of medical equipment. It is important to note that the child life specialist must maintain a difficult balance as director; she must encourage the child to play freely while making sure the equipment is used properly, otherwise the intent of the rehearsal will be lost. Theatre directors face a similar dilemma; they must ensure the vision of the play is accomplished while encouraging actors to creatively play the characters they represent.
Medical play is not limited to the use of dolls and role-play. Another form,
―indirect medical play‖ encourages children to use medical equipment in a non- traditional way, stimulating creativity and imagination. For example, syringes become squirt guns in water-play, basins turn into drum sets, and tubing becomes giant straws
(McCue 160). Children are also encouraged to create sculptures and collages from medical equipment (www.chop.edu). This stimulates the child‘s imagination and
5 While I use the terms ―surgeon‖ and ―operating room‖ it should be noted that medical play can be used to demonstrate routine procedures such as drawing blood as well. 22
creativity while empowering him to take control of the situation by choosing how the equipment is used. Children use the medical equipment to communicate their emotions in a non-verbal way creating another dimension of self-expression. This gives the child life specialist more insight to the emotional state of being as well as the progression of development. For children, this small amount of control creates a much needed boost in confidence in themselves as a person and not a patient.
The relationship between the child life specialist and theatre has been an unconscious one. Child life specialists do not bring activities to children with the intent of creating a performance. During the creative explorations of emotions, performance naturally emerges. Children need to remove themselves mentally from their situation in order to process it and understand how they feel about it. The use of role-play with puppets and/or dolls allows children the space they need to play and communicate information regarding their situation. While child life specialists play activities with children, they also bring in outside forms of stimulation including, movie screenings, musical entertainers, traveling science exhibits, and clowns specially trained to perform in hospitals. Most of the stimulation brought into the hospital offer some element of performance and entertainment. This is because theatre naturally appeals to all forms of learners, visual, kinesthetic, and aural, by providing activities that combine at least two of the three forms. For example, movie screenings keep them in touch with what their peers are watching, and show them different personalities and problem solving techniques, making it more than just entertainment. Children learn from watching others; this helps them decide what types of personalities they like and dislike. Traveling 23
science exhibits and musical entertainers appeal to aural and kinesthetic learners by giving them something to touch, see, and/or listen to. Although outside stimulation helps to maintain a sense of normalcy for children in hospitals, careful consideration must be given when bringing in outside entertainment, as hospitals have restrictions for the safety of the children, including the proper sanitization of equipment and the amount of direct interaction with the children.
Hospital clowns enter to provide much needed laughter and joy, while providing intellectual stimulation and empowerment to children. They use theatre directly to bring children into the role of director when performing for them. They have been trained and informed of medical procedures therefore they know the limitations of their audience.
They work around the constraints of the child making sure he feels as normal as possible.
The introduction of the hospital clown changes the relationship between theatre and hospitalized children from an unconscious one into a conscious one.
THE HOSPITAL CLOWN, PERFORMANCE, AND THE EMPOWERMENT OF CHILDREN
The history of clowning has a long relationship with the art of healing, primarily recognized in several Native American cultures. Clowns within these cultures participate in healing ceremonies by performing improvised scenes, exorcising disease, and sometimes even indirectly curing various ailments (Miller Van Blerkom 463). It is in these cultures that illness is believed to take place in the ―human dimension‖ and can be removed by ―manipulating the personal, social, and cultural meanings of the illness experience‖ (Miller Van Blerkom 464). Clowns contribute to this by performing 24
―contrary‖ behavior, such as ―talking or performing action backward‖ because this violates ―natural and social conventions‖ (Miller Van Blerkom 463-464). Hospital clowns currently found in children‘s hospitals perform similar acts of contrary behavior by basing their clown characters on doctors and performing silly acts of play with real medical equipment.
Hospital clowns, also known as ―therapeutic clowns‖ or ―clown care‖ also stem from these ―healing clowns‖ by bringing positive energy into hospitals that help the healing process. Both use performance to create humor, laughter, and a positive atmosphere for patients and staff. The idea that humor and laughter helps patients heal has recently gained recognition as more than ―alternative medicine.‖ Hospital clowns primarily focus on children in their performances because children accept clowns more readily than adults. As mentioned earlier, children have not yet developed the fear and denial that adults have regarding clowns and laughter. They still want to have fun and play, no matter what their situation. The hospital environment is not always conducive to fun and play until others enter with the direct goal of lightening the environment. Child life specialists introduce play with the intent of gathering information while hospital clowns bring play intending to entertain and empower.
One of the first well known clowns to enter the hospital setting was Dr. Hunter
―Patch‖ Adams, who inspired the 1998 film Patch Adams. Adams believes that humor and friendship are two of the most powerful tools a doctor should possess. Adams and his colleagues focus on fund-raising, educational programs, and global outreach including humanitarian clowning to ―promote compassion in healing‖ (www.patchadams. 25
org/hospital-paper). His style of clowning includes elements of make-up and costume rather than a traditional white faced clown. His signature element, the red clown nose is all that is needed for a child to recognize him as a clown. His form of entertainment includes silly demeanors, while incorporating music and the use of bubbles to provide distraction to patients during procedures. His use of performance provides distraction for children undergoing painful procedures in hospitals that do not offer complete modern day technology. He creates an instantaneous make-believe world to bring children into and allow them to remain calm while the doctors do various procedures. Adams‘ belief and practice of clowning within the health care system has since opened the doors for hospital clowns to become a recognized beneficial tool to have present in the hospital.
As Adams demonstrated, hospital clowns differ from circus clowns in several ways, the most predominant being their physical appearance and the performance of their
―routines,‖ or their own personal brand of comedy. Circus clowns base their routines largely on slapstick and physical humor, including physicality against one another. They must maintain a general sense of being ―larger than life‖ due to the fact that they must be visible to audience members sitting far from the stage. In order to accomplish this, everything about his character must be enlarged including the ―spectacular movement, glittering costumes, oversized props, broad gestures, loud explosions, chase scenes, flamboyant make up, and obvious physical contrasts in order to entertain a crowd in a large, three ring style circus‖ (Towsen 271). In addition to the largely performed physical humor, the circus clown maintains a traditional, fully made-up face consisting of a white face, red nose, and brightly colored mouth. This style of character make-up was 26
created as a way to make the clown‘s features stand out for large audiences (Towsen
271).6 Hospital clowns have maintained the core ideas of the circus clown, to entertain and provide humor, while adjusting their physical appearance and routines based on the parameters set forth by the nature of the hospital.
Hospital clowns design their characters and appearance to fit the emotional needs of hospitalized children while respecting the regulations and restrictions placed upon them by the hospitals. Many hospitals have specific rules regarding where clowns can perform (personal rooms versus group rooms), what props they may use, and whether or not they may enter the hospital in clown costume. Not all hospitals have the same restrictions; therefore, hospital clowns must meet with hospital personnel before they begin in order to learn the parameters of their visit. A lot of hospital clowns belong to a specifically designed clown organization, such as the Clown Care Unit, that provides this training and information to them.
The Clown Care Unit (CCU), one of the most recognized hospital clowning groups in the United States, was created by Michael Christensen in 1986. Christensen, a cofounder of the Big Apple Circus in New York, realized clowns could provide a service to children in hospitals by bringing in laughter and self-confidence (Miller Van Blerkom
462). Currently, the CCU has ninety-seven clowns on staff, which perform in eighteen hospitals nationwide (www.bigapplecircus.org/community/clown-care.aspx). All clowns must have background training in circus clowning and must audition to become a hospital
6 The circus clown has a long and rich history. For the purpose of this chapter, I focus solely on the physical representation in order to provide a contrast to that of the hospital clown. 27
clown. Once hired, they are trained in ―hygienic practices and protocols and in specific issues related to interacting with hospitalized children‖ and meet regularly as a group to discuss effective performance techniques or ―routines,‖ as well as share their experiences in the hospitals (www.bigapplecircus.org/community/clown-care.aspx). They also consult with the doctors and hospital staff about their young patients in order to create the most effective act possible.
When creating characters most hospital clowns begin with their background training as a circus clown. They strip away the flamboyancy of their previously developed character and begin to create one based on doctors or nurses. By becoming caricatures of doctors and nurses they bring in the element of contrary behavior first seen in Native American cultures. For children, the intended audience of hospital clowns, this makes doctors and nurses seem less scary and more approachable. In addition to their character development, most hospital clowns wear little or no make-up, hats instead of wigs, and a traditional white lab coat. Make-up may consist of rosy red cheeks, large freckles, a traditional red nose, and overdone eye make-up, all without the white face. By trading a traditional white face for a natural one, hospital clowns become less scary to those children who may harbor a fear of clowns. The bright red mouth of the circus is also left behind as this image may perpetuate the fear of clowns. Their costumes become simple, brightly colored clothing instead of the more elaborate costumes of the circus.
When combined, the minimal make-up, simple costume, and white lab coat creates an inviting doctor character, one that children can relate to while making them more 28
comfortable around the actual medical staff. In the hospital, clowns emphasize their characters and performance rather than their physical appearance.
The hospital clown must have a variety of performances ready when entering the hospital, as the needs of patients vary from day-to-day, and patient-to-patient. However, the heart of all performances is to bring humor, laughter, and empowerment to children as well as families and hospital staff. The elements of performance employed by hospital clowns include, but are not limited to, puppets, physical comedy, pantomime, and improvisation, all of which stem from the humor of the circus clown. They differ because the hospital clown‘s routines are brought to a smaller level, while providing empowerment to children, stimulation of the imagination, and joyful shared experiences.
The idea of bringing empowerment to the child comes from putting control back into hospitalized children‘s hands. The sense of control has been stripped away from children as they rarely have a say in their medical treatment. This exclusion takes away their self confidence as they no longer feel validated as people; instead they must do what they are told. When a hospital clown enters, the goal becomes to entertain while giving a small amount of control back to the children. Much like the child life specialist, the hospital clown wants to help children feel ―normal‖ and not be restricted by their illness. Unlike the child life specialist, the hospital clown directly and consciously brings in performance and theatre roles such as director, to help empower the children.
The hospital clown brings empowerment to children by giving over control of the performance to them. In other words, the children become directors of the scene by controlling how much or how little interaction they want from the clown. Being admitted 29
into a hospital means no longer being able to make decisions about your own body, especially for children. For school-age children old enough to understand their diagnosis, this lack of power is frustrating and leads to anger, resentment, and depression.
Empowerment begins before the clown enters the room by asking permission to enter from the patient. This gives children the opportunity to make a choice based solely on their own personal wants and needs, not what is ―best‖ for them. If the answer is ―no,‖ the hospital clown politely leaves without hesitation. The clown understands that this may be the first opportunity the child has had to say the word ―no‖ and feel good that his decision was respected. This small choice allows children to feel a sense of accomplishment that boosts their self-esteem at a time when they are not allowed to make decisions for themselves.
Once a child welcomes a clown into the room, the child(ren) changes from being a patient to being a director while the clown continues his role as actor. The clown immediately begins a performance based on the needs of the child(ren) being entertained.
Performances may involve puppet play, mocking doctors and nurses, physical humor
(such as ―bumping‖ into things), and indirect medical play demonstrated earlier with the child life specialists. The hospital clowns make sure to listen to the child‘s reaction and direction regarding performance. Hospital clowns Jay Stewart and Brian Dwyer share some of their experiences in the Cape Cod Times, including one where a young male patient had very specific instructions regarding what they could and could not do for him.
He told them they were not allowed to make him laugh out loud because he was ―afraid convulsive movements of his chest will hurt a port that‘s been installed to deliver 30
medication‖ (McCormick 1). This simple demand allowed him to assert control over his situation. The clowns obliged by quickly changing their routine from one based on physical humor to one featuring smaller magic tricks. The boy showed his appreciation by giggling softly in response to the tricks.
Contrary to this scenario, a young female bed-ridden patient demanded the clowns bang ―hard‖ into a wall several times, while only showing the ―faintest glimmer of a smile‖ (McCormick 1). Stewart and Dwyer, who followed her commands, enabled the girl to exert her frustrations with her own lack of movement, by permitting and giving in to her demands. They encouraged her decisions by doing exactly what she asked, no matter the consequence they may have faced physically. In addition to empowering the girl to make decisions, the trio shared a moment of trust and mutual respect. When the clowns followed her instructions despite their physical pain, the young girl was able to trust that they would listen to her. She also saw that she was respected as the ―director‖ of the scene and that her words would be taken seriously. This does not always happen for hospitalized children as their parents and doctors must decide the best way to treat their disease. This performance allowed the young girl to feel like she had a small amount of control over her situation.
Another source of empowerment for children comes from becoming active audience members. While the children direct the clown‘s act, they also watch and enjoy the entertainment. In that moment, they become ―kids‖ and not ―patients.‖ Karen
McCarty, also known as ―Dr. Ginger Snaps‖ works with the CCU and shared a personal story about the clown‘s need to be ready for anything while performing in a hospital. 31
While working as ―Dr. Ginger Snaps,‖ a distraught mother urgently begged her to entertain her son, Tim, who was about to have his leg amputated. While McCarty, in that moment, did not know what to say or do for the child, she obliged by entering his room and waited for Tim to speak first. Tim began the conversation by asking if he had to go through with the operation and she replied that it was the best thing for him. Recognizing that she had to do something for Tim, she then said, ―But we can do whatever you want for the next five minutes!‖ Tim responded with, ―I want to jump on the bed!‖ She told him to do it, and cheered him on as he broke all hospital rules by jumping up and down on his bed. When the time came for Tim to be taken to surgery, he climbed onto the gurney without complaint. This story demonstrates how allowing children to make a decision, no matter how small can comfort and validate their sense of self as a person.
When McCarty obliged Tim‘s wish to jump on the bed while acknowledging that they were breaking the rules, she allowed him to be a ―kid,‖ not a patient. This simple act helped Tim feel validated as a person while giving him the opportunity to come to terms with the loss of his leg. He needed one last moment to jump and be free in his movement knowing that he may not have another opportunity to do so again for a while, if ever.
―Dr. Ginger Snaps‖ through her performance, allowed Tim to have control over his situation for one last moment. For a child, a seemingly small moment is enough to make him feel better.
When performing ―clown rounds‖ throughout the hospital, clowns often develop bonds with long-term patients. They learn about the child‘s likes, dislikes, and emotional needs and cater their routines accordingly. This helps children feel more comfortable in 32
their surroundings; the hospital feels more like home when there are familiar faces around. This also allows children to express their own feelings more readily without the use of puppets or dolls. The online ―Hospital Clown Newsletter‖ contains stories from and about clowns‘ experiences (http://www.hospitalclown.com/InfoPages/storiesTable.
Html). Marcela Murad, a hospital clown who goes by the name ―Mama Clown,‖ shared a story about a bond she developed with an eleven-year-old patient named Stephanie.
Stephanie had a terminal illness and was learning how to cope with her impending death.
When Stephanie asked Mama Clown what happened to people when they died, Mama
Clown responded with, ―I don‘t know about regular heaven but I know clowns go to
Clown Heaven.‖ Stephanie asked if she could go to Clown Heaven. Mama Clown told her all she needed was a clown nose and she would be in. Mama Clown then painted a red nose on Stephanie. From that day on, whenever Murad visited Stephanie she would paint a red nose on her to make sure she was ―ready.‖ When Stephanie passed, Murad was out of town, but the nurses made sure she had on her red nose. The story concludes with the revelation that Stephanie‘s parents buried her with a red nose painted on, because, ―Mama Clown had given her a fantasy that carried her through to the end.‖
Murad used theatre to bring Stephanie into another world by creating a new environment and character for her to become. Stephanie was no longer a dying girl; she was a clown about to embark on a new journey into ―Clown Heaven.‖ Stephanie‘s insistence on having a red nose painted on, shows that she accepted her fate, deciding to become her clown character to the very end. She no longer feared moving on because she was going to a wonderful, fun-filled place with familiar people, clowns like the ones 33
she grew to trust while in the hospital. Murad had built such a relationship with
Stephanie through her performances that Stephanie felt empowered in herself. Did she know she was dying? Yes. Did she allow her death to be sad? No. Stephanie used her imagination, with the help of Mama Clown, and created a place she could look forward to entering. Her family also took comfort in her passing by knowing that Stephanie had such a beautiful ―fantasy‖ to help her through. None of this would have happened if not for the hospital clown‘s performance of a fantasy world and subsequent character development that allowed Stephanie to create an environment she could be comfortable in.
In conclusion, theatre‘s presence in the children‘s hospital has taken on many different roles and titles. The child life specialist gives children an outlet for self expression through the safety net of conversational puppetry and/or medical play, while the hospital clown gives children confidence by relinquishing control and validating their decisions. Theatre allows children to be heard through both indirect and direct performance. These performances happen through conversational puppetry, role-playing with medical equipment, and the creation of imaginary worlds brought by clowns. While children are still developing cognition and may not fully understand the state of their diagnosis, they know when adults have shifted in the way they view them. Children need to have their opinions validated, be reminded their voice counts, and feel they have the freedom to express themselves. The indirect presence of theatre in the hospital setting shows that performance occurs in play naturally; children learn how to cope and understand their situations through various forms of play with the child life specialist. 34
When performance becomes a conscious decision to be used, it brings with it validation in decision-making skills. The next step involves theatre becoming a conscious decision on the part of the child life specialists to create works of performance for others to see, based on the child‘s viewpoint. Specific performances based on children‘s experiences can be shown to family, friends, and hospital staff. This allows for the exchange of both expression and listening. The performance of the hospital setting can create an even stronger relationship between children and adults by becoming a third party to tell their stories. This means the characters created by children tell the story, while the story itself becomes a permeable wall to give and receive information. Both the child life specialist and the hospital clown have touched on the importance of this wall through their indirect and direct use of theatre, now it is time to take it to the next level and allow children to consciously perform their stories for a wider audience.
35
Chapter 3
THEATRE AS AN EDUCATIONAL TOOL: HOW HUMOR, INTELLECT, AND ONE GIRL’S FIGHT WITH CANCER TAUGHT OTHERS COMPASSION
My story is a lesson for everyone. You may have something horrible and scary happen to you, but you don’t have to curl up in a ball and become a hermit. I know a girl who had one leg, no hair, and she was sick almost all the time. But she had fun, and she was always sweet and fun to be around. She died recently, but she was sweet all the way through. You never know what kind of person you are until you are tested. Like I said before, I passed the test, but it was only one test. There could be more. Until then . . . I . . . am . . . alive. ~Shenita Peterson, This is a Test: One Girl’s Fight with Cancer, 279
As discussed in the previous chapter, theatre has the ability to facilitate communication between children and adults regarding sensitive topics by using performance as a springboard for conversation. In 1993 Margaret Edson published her first play W;t about fifty-year–old Vivian Bearing, a fictitious woman dying of ovarian cancer. Cancer, at any age, is a terrifying subject matter that is difficult for many to discuss. Edson succeeded in starting a conversation about women and cancer by writing a play that gives insight to the human side of being a patient. The plot of W;t concerns
Vivian coming to terms with her impending death while realizing how she treated her students in the same cold, calculating manner that her doctors now treat her. Vivian switches between talking directly to the audience and becoming part of the scene, which makes her character more personable to the audience. She tells them directly in her opening monologue, ―It is not my intention to give away the plot; but I think I die at the end. They‘ve given me less than two hours‖ (Edson 6). The play takes place almost 36
entirely in Vivian‘s hospital room, and has minimalistic staging that uses the entrance of characters to indicate a change in scene. The lack of an elaborate set and props allows
Vivian‘s character, and her words, to be the focus of the play. During the course of the play, doctors enter and treat Vivian as a mere tool to obtain research and not as a human being. They make no attempt to get to know her or to comfort her in her time of need.
She comes to terms with her past and the play concludes with Vivian‘s death. Edson succeeded in creating a forum for the subjects of women, cancer, and the way patients are treated in the hospital.
In 1999, Edson won the Pulitzer Prize for W;t due in part to her creation of a platform for women and cancer. Her play is not just about death; it is about a woman realizing how to live life. This empowerment of her character can transfer into the lives of those watching it. The play is performed with a ―stage [that] is empty, and furniture is rolled on and off by the technicians‖ which keeps the focus of the performance on the actor (Edson 4). When an actor performs on stage solo, the focus remains on what the character says, rather than what happens around her. This creates a sense of intimacy with the character because ―an audience will tend to see the character presented as an expression of something very personal to the writer-performer‖ (Bottoms 521). In other words, even though Edson‘s play is fictional, the strength of her writing and lack of distraction allows Vivian to become a real person. This type of intimate writing is difficult for an adult to accomplish, let alone a young girl. Three years after W;t was published, a remarkable girl named Shenita Peterson created a similar springboard when 37
she wrote the play, This is a Test: One Girl’s Fight with Cancer. However this time, the author, a twelve-year-old girl reveals her personal, not fictitious, battle with cancer.
Theatre‘s role in the lives of children continues to develop in both indirect and direct ways. This chapter examines how one girl‘s journey through her hospital experience translated into a play, a piece of literature written with the intent of being performed. This is a Test: One Girl’s Fight with Cancer, discusses topics similar to ones found in Edson‘s W;t, including cancer, doctor/patient relationships, and the choice to live life in the moment. This is a Test also successfully used theatrical elements including direct audience address, minimalistic staging, and intellectual humor to explore the doctor-patient relationship on stage. The difference between This is a Test and W;t, is the former is based on the actual life experience of a young girl and the latter is a fictional play written by an adult woman. Shenita uses theatre to acknowledge out loud that she was not treated fairly in the hospital and that her opinion is important and valid.
To do so at such a young age is admirable and demonstrates the effectiveness of theatre as both a learning and teaching tool. This is a Test became a mirror for adults, specifically in the hospital community to see how their actions affect people in their care.
This chapter traces how theatre helped become the vehicle to open up conversations regarding childhood cancer, adolescents, and the way adults view them.
In 1995, twelve-year-old Shenita Peterson attended seventh grade at Washington
Irvine Elementary School in Chicago, Illinois.7 In April of that year, Shenita began to
7 Washington Irvine Elementary School teaches students in kindergarten through eighth grades. 38
complain that her right knee hurt (Carlozo 1).8 Everyone, including her mother, Gaynell
Brewer, dismissed her pain as growing pains. While visiting Walt Disney World that
June, Shenita continued to complain and her knee swelled to three times its normal size.
Her mother took her to see several doctors and specialists seeking a diagnosis. They soon learned Shenita had ―osteogenic sarcoma,‖ the most common type of bone cancer among children usually occurring between the ages of ten and twenty-five (HealthLink: Medical
College of Wisconsin). Shenita‘s oncologist admitted her into the University of Illinois hospital where she faced several surgeries and rounds of chemotherapy. In October
1995, doctors removed part of her leg and replaced it with a titanium rod, causing her to lose the ability to bend her knee.9 As a result, she walked with one leg stiff that made her gait noticeably different from other students her age. Not only did Shenita have to deal with the emotional and physiological changes her adolescent body experienced, she now had the added stress of cancer and loss of her knee.
Before her diagnosis with cancer, Shenita attended drama classes taught by Ewing
Eugene Baldwin.10 Mr. Baldwin visited Shenita in the hospital several times during her stay and brought to her the idea of writing about her hospital experience and cancer. She told him she did not like the idea of writing about herself because it would add attention
8 I refer to Shenita Peterson as ―Shenita‖ for the remainder of this chapter because her young age of twelve is a focal point for this thesis. I believe that theatre and performance creates a venue for unheard voices, specifically children, to be heard and Shenita‘s play demonstrates this point. I purposely refer to her as ―Shenita‖ to remind, you, the reader, of her youth.
9 Shenita received an artificial knee joint roughly eight years later.
10 I refer to Ewing Eugene Baldwin as ―Mr. Baldwin‖ hereafter to emphasize his teacher/student relationship with Shenita. 39
to her. Mr. Baldwin did not bring up the idea again until Shenita returned to school almost a year later. Upon her return, Shenita, bald from the chemotherapy and using crutches to help her walk, inspired Mr. Baldwin to shave his head in an effort to ―show solidarity‖ (Baldwin, ―Re: This is a Test . . . questions about the play‖ par. 18). He brought up the subject of writing once again, this time with the support of Shenita‘s close friends and classmates who wanted to help. Shenita finally agreed to write a play.
This is a Test: One Girl’s Fight with Cancer, written in 1996 right after Shenita‘s return to school, developed as a class project supervised by Mr. Baldwin and took approximately eight weeks to write (Baldwin, ―Re: This is a Test. . .‖ par. 5).11 Shenita wrote all the monologues, the other students formed groups of three to four to write the scenes and dialogue, and Mr. Baldwin then ―stitched all the pieces together‖ (Baldwin,
―Re: This is a Test . . .‖ par. 2).12 This is a Test: One Girl’s Fight with Cancer follows
Shenita‘s journey from diagnosis to recovery.
This is a Test is a postmodern, one-act play with seamlessly flowing scenes, designed like W;t, to keep the focus on Shenita‘s character. The scenes shift among
Shenita‘s hospital room, her dreams, and moments of direct audience address giving it a stream-of-consciousness feel common in many postmodern plays. Just like W;t, character‘s dialogue and/or the introduction of set pieces indicate a change in scene. An ensemble of six actors comprise the Chorus and double in supporting roles, while the
11 While Shenita is listed as the primary author, Mr. Baldwin and her classmates‘ names are listed as coauthors and own partial rights to the play.
12 It should be noted that one additional group researched and created a student guide on cancer for children. 40
character of Shenita Peterson, is performed by a separate actor.13 The play begins when
Shenita enters and explains to the audience that this play is about her experience with bone cancer and hospital staff, specifically medical residents. Shenita felt she was treated like a ―doll‖ when residents entered to conduct examinations of her body without acknowledging her. Later in the play, a frustrated Shenita dreams a conversation with
God to receive answers to questions regarding her fate. Toward the end, Shenita stops doing her school work and favors lying in bed to watch television. This prompts her social worker, Kirsten, to call a meeting with her mother and doctors to determine how quickly she can return to school. The play concludes with Shenita, alone on stage, telling the audience about her return to school, acknowledging that her battle with cancer was one obstacle of many, and revealing that she is ready for anything that comes her way.
The script began as a project to help Shenita share her story with her schoolmates, yet it developed into much more. Mr. Baldwin gave it to Mary Ellen McGarry, a friend and theatre director, to read. She wanted to direct a performance for Shenita‘s school, and insisted that professional actors perform instead of the students. This allowed
Shenita‘s classmates to watch the play for the story, rather than only see their classmate on stage. Putting Shenita onstage would create an air of discomfort for the students, thereby defeating the goal of creating a comfortable atmosphere to discuss the scary subject of cancer. Mr. Baldwin hired the actors, raised the funds to pay for the
13 The Chorus provides definitions of medical terms and sound effects to stress various points in the plot. 41
production, and invited the hospital staff and doctors involved with Shenita‘s treatments to attend the performance. Suzanne Poirier, a doctor at the University of Illinois hospital, attended the production and later approached Mr. Baldwin about touring This is a Test to local hospitals to instruct medical students about how to interact with adolescent patients.
Mr. Baldwin agreed and Poirier contacted various teaching hospitals in the Chicago area.
Shenita accompanied the play to the hospitals and participated in a question and answer session after each performance. Also during this time, Mr. Baldwin entered the play into a local playwriting festival sponsored by Chicago‘s Pegasus Players. This is a Test won the contest and was performed by the company‘s actors for the general public in January
1998. Later that year, This is a Test, was published in Literature and Medicine by the
Johns Hopkins University Press, a highly regarded medical journal. The fact that a play written by a twelve-year-old girl was published by Johns Hopkins University shows that her story, her voice, shows that the academic and professional field of medicine recognized Shenita‘s story, her voice, as a vital contribution to understanding the fears and frustrations of youth hospital experiences.
This is a Test became a teaching tool to show adults that children and adolescents have valuable opinions on difficult subject matters and should be taken seriously.
Through her writing, Shenita conveyed the importance of compassion within the doctor- patient relationship, especially concerning children and adolescents, by sharing her point of view. This chapter shows how theatre enabled Shenita to make her voice heard; a voice to which adults listened and responded to. Adults forget what it is like to experience the confusing evolution from adolescence into adulthood. Witnessing a 42
production written from a young girl‘s perspective created a springboard for conversations to begin. For Shenita, the script gave answers to questions she was afraid to ask, and expressed her opinion on the treatment she received. Theatre, specifically the script and performance, breathed life into the subject of childhood cancer that, until this point, had not received much attention. The productions at her school, teaching hospitals, and one Chicago theater, allowed a vast and diverse group of people to see and learn from her story. Her school community witnessed what she went through and together learned how to talk about it. It is important to allow children to discuss issues that concern them freely, especially scary subjects such as a classmate‘s cancer. Adults find this topic difficult to talk about and try to avoid discussing it with children. They forget that when topics are avoided, they become a focal point in a child‘s mind. Part of being a child is having an active imagination, and when questions go unanswered by adults, children make up their own answers. Here, performance creates a way to answer children‘s questions truthfully, while teaching medical students empathy and the importance of personal interaction with adolescent patients. The general public saw a young girl‘s intellect, strength, and humor in the face of an ugly disease.
SHENITA‘S DIRECT COMMUNICATION THROUGH THEATRE
Shenita‘s age at the time of publication is an important factor in how This is a
Test was viewed by adults. No one expected a twelve-year-old to write a sophisticated postmodern play. The focus of the play changes from the internal thoughts of Shenita to the external experiences within the hospital, similar to Vivian's journey in Edson's W;t. 43
The fact that Shenita accomplishes the same style at twelve demonstrates and validates her intellect as an adolescent on the brink of adulthood. While her language seems juvenile and a contradiction of her maturity at times, I argue it becomes a reminder of
Shenita‘s strength and young humor as the play progresses, by demonstrating her real thoughts through her character. In his article, ―What is Performance?‖ Marvin Carlson writes: ―[U]pon [actors‘] own bodies, their own autobiographies, their own specific experiences in a culture or in the world, made performative by their consciousness of them and the process of displaying them for audiences‖ (150). Carlson was relating the fact that authors and actors bring a piece of themselves and their experiences into productions in order to make the performance more real. The sometimes juvenile tone of her language serves as a reminder that the play is in fact, based on actual events and people and is written in the language of all those involved. This is a Test, communicates the brutally honest hospital experience from an adolescent‘s perspective which changed the way many adults thought about it.
Through direct audience address Shenita breaks the fourth wall and speaks her mind. This allows her to create intimate moments that share her feelings on situations regarding her time fighting cancer. In the following scene, Shenita and her mother are waiting for her pediatrician Dr. Chandler, to share her findings on the x-ray of Shenita‘s knee. Shenita is anxious and feels that her doctor and mother are talking about her rather than to her:
DR. CHANDLER. Um hum . . . oh yes . . . yes.
SHENITA. What do you see, Dr. Chandler? 44
DR. CHANDLER. Oh, it‘s nothing, hon. It‘s nothing. Just lie back and
relax.
SHENITA. (to audience) Well, you‘re the doctor, and you‘re supposed to
tell me what‘s happening inside my body. I said that part to myself. I
was embarrassed to ask the right questions. You know how doctors are
kind of intimidating?
DR. CHANDLER. I can tell you that you will have to see an orthopedic
doctor. A specialist who knows all about bones.
SHENITA. Orthopedic doctor? For what?
DR. CHANDLER. It‘s probably nothing to worry about.
SHENITA. (to audience) In other words, it was something to worry
about.
MOM. Now, don‘t you feel better? There‘s nothing to worry about.
(DR. CHANDLER and MOM look at each other knowingly.)
SHENITA. (to audience) And then they look at each other. You know,
how grownups look when they think you don‘t know they‘re looking?
So of course I thought something must be really wrong. (Peterson 260-
261)
In this scene, Shenita feels she is being undermined intellectually when Dr. Chandler tells her not to worry about her x-ray results. Of course she should worry; they are discussing the results of her knee, her body. It is not that Dr. Chandler thinks Shenita cannot handle the situation exactly; she just wants to protect her from the truth for as long as possible 45
because she does not want to frighten her. Unfortunately, doing this hurts Shenita‘s sense of self-worth. Doctors and parents often make decisions regarding children‘s treatment without involving them in an effort to protect them from fear for as long as possible.
They also need to remove themselves from their children in order to make the best decision for them. Sometimes including children in the decision becomes too emotional and clouds the judgment of adults. While the intent behind this choice is admirable, it has been proven recently, that the opposite happens. Children inherently know when adults are discussing them, and know when they are being left out. A 2008 Pediatrics article addresses children‘s involvement in communication regarding their health:
[inclusion] shows respect for their capacities, will enhance their skill in the
process of making future health decisions, and enables their essential input
into decisions where there is no ―right answer‖ other than the 1 that best
meets the needs of the individual child and family. Older children and
adolescents should have a significant role in such cases. (Levetown 1445)
The American Academy of Pediatrics came to the conclusion that children and adolescents should be actively involved in their treatment twelve years after Shenita‘s play was published. While I cannot make a definitive argument that her play helped this topic come to light for the entire country, I do contend that Shenita‘s play made a difference to the adults in her surrounding community. At the time of Shenita‘s diagnosis, Dr. Chandler believed she made the right decision to exclude Shenita from the discussion; though Shenita‘s direct audience address shows otherwise. Shenita knows that something frightening is happening to her; she knew this when her knee began to 46
consistently hurt. Due to Dr. Chandler‘s reaction in the real life moment, Shenita kept her emotions to herself. She was ―embarrassed to ask the right questions‖ because she felt intimidated. Through the play, Shenita allowed herself to share her embarrassment and fear. She used her play, with the intent of performance, to finally speak the words she wanted to say at the time.
Later in the play, a frustrated Shenita turns to a higher power, God, through a dream conversation, in order to receive answers to her questions. The stage directions read that Shenita ―comes to, in a pool of light‖ and God remains off-stage throughout the conversation (Peterson 271). This exclusion of a visual, physical representation of God again creates an intimate moment on stage by keeping the focus solely on Shenita, not the physical presence of God, making her words more powerful.14 In this moment, she dreams she confronts God and demands answers:
SHENITA. So tell me God, why did it have to be me? Why?
GOD. Shenita, that I could not say.
SHENITA. Were you the one who chose me to get sick? Were you?
GOD. Shenita, if I had chosen you, I‘d know why.
SHENITA. Well, am I gonna die?
GOD. That depends on you. If you will just be strong, you will know the
answer.
SHENITA. Oh. By the way, God, I always wondered. Is there a heaven?
14 In one production, Mr. Baldwin, a trained opera singer, performed the role of God by singing off-stage. 47
And am I gonna go up there . . . or down you-know-where.
GOD. Shenita, be strong. Don‘t let anyone defeat you.
SHENITA. Sorry if I‘m pressuring you, God, but I want to know so that I
could do all the things I wanted before I die.
GOD. You are not pressuring me, Shenita. The answers to your questions
come in time. (271)
Shenita asks God point blank if she is going to die. She can neither ask her doctors this question nor expect an honest answer from them. They would tell her not to worry, just as she was told not to worry about her initial diagnosis. This moment, taking place in her dream, demonstrates an element of postmodernism, the questioning of reality. It is open to interpretation if she, Shenita, is giving herself the answers, or if there is a real conversation with God in her dream. This level of sophisticated writing demonstrates her level of intellect, thereby validating the idea that adolescents‘ thoughts should be taken in consideration in their medical treatment. Twelve-year-old Shenita acknowledges through this scene that she has to be strong to survive her fate. She understands the possibility that her death could be imminent and wants to do the most with the time she has. This scene balances the humor and the somber, while demonstrating her youth. She asks God if she is going to heaven or ―down you-know-where.‖ By omitting the word ―hell,‖
Shenita reminds us that she is still a young girl who might get in trouble for using inappropriate language. It is also humorous that she does not use the word ―hell.‖ She is a strong young girl confronting God about having cancer, and suddenly she slips into child-like tendencies because of one small word. This moment reminds adults that 48
Shenita is in the midst of adolescence, a strange and difficult life stage. She is not yet an adult, but no longer a child.
THE IMPACT OF PERFORMANCE ON THE COMMUNITY
This is a Test went on to be performed in several different venues, each one accomplishing a different goal. The initial production took place at Shenita‘s school.
The goal of this production was to share with the entire student body Shenita‘s experience in addition to creating a comfortable atmosphere for the students to discuss cancer.15 Through the play and its production, Shenita answered questions students had on their minds, but did not want to ask. She encouraged her classmates to laugh in the face of cancer as shown in the following scene between the Angel of Life and the Angel of Death. The two characters enter Shenita‘s hospital room, each one believing they are going to take her away. Their argument escalates into a physical tug-of-war with
Shenita‘s arms.
ANGEL OF DEATH. She‘s coming with me!
ANGEL OF LIFE. Oh no she‘s not!
ANGEL OF DEATH. Oh yes she is!
ANGEL OF LIFE. Not!
ANGEL OF DEATH. Is!
15 A year earlier, another classmate, Oscar Gallardo died from cancer. According to Mr. Baldwin, when Shenita was diagnosed, feelings of fear and anxiety regarding death were felt throughout the student body. They became fearful of losing another classmate, and her absence during treatment heightened their fear. Not only did Shenita‘s play help her come to terms with her battle, it allowed her classmates the opportunity to share their own emotional battle. 49
ANGEL OF LIFE. Notnotnotnotnotnotnotnotnotnotnot!
ANGEL OF DEATH. Isisisisisisisisisisisisisisisisisisisisisisisis! (269-
270)
The two characters fall into the old schoolyard argument of ―is not/is so!‖ which mimics students‘ behavior on any number of topics. This scene reminds the young audience that laughter is important, and that in spite of everything Shenita is a ―normal‖ girl, who happened to develop cancer. This well-placed humorous moment helps the play become enjoyable to watch and creates a more comfortable atmosphere.16 Students with lingering questions could approach an adult in regards to what they saw. The adult has the performance as a starting point for the conversation.
Shenita continues to share her thoughts regarding her experience through direct audience address. These moments differ from the traditional ―aside‖ as she does not comment about a moment on stage, rather she shares private thoughts about her experience. During one such moment, she speaks from a hospital bed in the middle of the stage. In the following excerpt, during a chemotherapy session, she expresses her thoughts on what has begun happening to her physically. During the performance of this scene, she pulls hair out of her head and a chorus member brings her a large garbage can to throw away the ―clumps of hair‖ as she says:
16 The performance in the school setting adds to the level of comfort for the children watching because they are doing so in a familiar environment, their school. This helps them to relax and share their feelings regarding the subject matter because they do not have the fear of unfamiliar surroundings and people. The hospital environment discussed in chapter two may make children, and adults, slightly uncomfortable, therefore creating a more difficult path in which to discuss their feelings. 50
There are a lot of embarrassing and painful things that go along with
treatment. After one chemo my hair started falling out. I got a garbage
can and just started pulling, and clumps of hair separated from my head.
The most painful thing was the needles. There was a time when this nurse
tried to open my port-a-cath for the chemotherapy. That‘s a device they
put under your skin surgically. It‘s right under the skin, but you can‘t see
it. The needle is one-half inch long and wider than a regular needle. They
stick it in your chest. (pointing) This time, it didn‘t work right. She had
to stick the needle in three times. The port-a-cath still wouldn‘t work. It
hurt so much. I cried and cried. (268)
Shenita expresses her vulnerability here, both physically and mentally. Because of the lack of setting, her words paint a vivid mental picture of what she is going through.
Combined with the action of physically throwing away her hair into a garbage can, not a bag or basket, but a garbage can, the play becomes alive and real, no longer a performance, but a story being shared. In this moment, Shenita shows her strength in the face of difficult times by combining storytelling with a visually tactile image to make the moment much more powerful. The act of throwing away her hair signifies a part of her is
―garbage,‖ disposable. This feeling of utter helplessness overcomes Shenita and she admits defeat by crying when her port-a-cath fails. She is raw, and real, on stage. No longer a character, Shenita, the author, successfully translated the truth of childhood cancer to the stage without ―sugar coating‖ the reality for others. 51
The monologue changes subject to discuss the reoccurring theme of doctor/patient relationships. Shenita talks about how she was treated while in the hospital. As demonstrated by the previously discussed scene with Dr. Chandler, she felt that doctors and residents ignored her and only recognized her as a child. Residents would enter her room to conduct tests or administer treatments, not acknowledging Shenita as a person, but concentrating solely on her cancer. In an email regarding Shenita‘s hospital experience, Mr. Baldwin explained:
Her main issues with the hospital were concerning the way she was treated
as ―meat.‖ Several times while I visited her, interns would walk into her
room, remove her gown, leaving her naked, and prod her, oblivious to me
and anyone else who might be there. She lost all dignity and was talked
down to. (Baldwin, ―Re: This is a Test . . .‖ par. 8)
Shenita brought this experience into the play. The tone changes as chorus members acting as interns walk silently onto the stage and ―poke her as she talks‖ (Peterson 268).
Shenita continues:
There were residents coming in my room in groups to check on me.
Residents are student doctors, and the University of Illinois Hospital is a
teaching hospital. The residents all wanted to touch me and know if this
hurts or that hurts. Doctors talk about you while you‘re there, as if you
were some kind of doll or something. There was always a reason to show
something on my body, or tell something. (268-269) 52
Not only does Shenita speak about feeling like a doll, the interns on stage perform the actions she describes. They poke her while she talks, unaware of the monologue being given. They show that she is akin to a lifeless doll, a child‘s toy, something to learn and practice on instead of someone to treat as a person. To them, Shenita is an anatomically correct medical doll, something they have been given practice upon and study. Instead of entering the room and asking Shenita how she feels, they walk directly over to her and start their task, leaving once they have finished. Shenita honestly describes her feelings regarding them, for she no longer has anything to hide. She uses the script to bring attention to situations where she had no control. Intellectually she knows she is admitted into a teaching hospital; she accepts that she is literally a teaching tool. However, she believes there should be more to teaching than simply being a body of research. She believes she should have been acknowledged as being a young girl, a person. The interns could have taken the time to talk to her. The American Academy for Pediatrics states,
Health care communication is currently learned primarily through trial and
error, [and] it is estimated that 35% to 70% of medicolegal actions result
from poor delivery of information, failure to understand patient and family
perspectives, failure to solicit and incorporate patient‘s values into the
plan of care and perceptions of desertion. (Levetown 1442)
In other words there are not any set standards for health care workers to learn how to form relationships with adolescent patients; they learn from their own mistakes. As with
Dr. Chandler earlier, the interns were not intentionally mistreating Shenita, they did not know any better at that time and they were learning through trial and error. They entered 53
to complete the task they were assigned, not knowing they should have tried to form a relationship with Shenita as a person. It may not have occurred to them to try to talk to her. Shenita wrote the play to be a reflective tool by creating a mirror image of how she was treated. She did not intend to teach interns how to relate to patients, but to rather to show what happened to her. Shenita did not know at the time that her play, the mirror she created, would later be used to teach empathy to medical students.
Following the production at Washington Irvine Elementary, This is a Test toured hospitals with the intent to show one girl‘s story of her hospital experience. Dr. Poirier believed This is a Test to be an informative way to demonstrate to medical residents what to avoid doing in regards to young patients. The performance combined with a post- show question and answer session with Shenita, showed students the need to engage in conversations with young patients. Levetown writes:
Children need to have usable information, to be given choices (including
their desired level of involvement), and to be asked their opinion, even
when their decision will not be determinative. Enhanced understanding
provides a sense of control, which in turn mitigates fear, reducing the
harms associated with illness and injury. Moreover, if the child is asking
about the condition, he or she often already knows something is wrong
and is checking to see whom to trust. (1446)
The more information children and adolescents have about their illness, the better. This helps them understand what is happening around and to them. All Shenita wanted was to have someone talk to her, explain to her what was happening to her body and how they 54
were going to treat it. Because she could not accomplish this while in the hospital, she turned to writing. Watching the performance of Shenita‘s story allowed interns, doctors, and nurses to learn from someone else‘s mistakes. Regarding the reactions of the audience watching the productions, Mr. Baldwin recalls, ―interns and nurses were the most visibly moved by the play. Doctors kept pretty quiet [. . .] they did it all the time: the human body as machine, forgetting the emotions of the patient‖ (Baldwin, ―Re: This is a Test. . .‖ par. 8). Interns were the most moved because they were at the beginning of their medical careers, they had yet to become jaded regarding their patients. Doctors were quiet because of the realization that they have treated patients in a similar manner.
The final piece of the play‘s performance history happened through the Young
Playwrights Festival, an annual event sponsored by the Pegasus Players Theatre in
Chicago, Illinois.17 The event began as a way to encourage teenagers to write about issues important to them, and to instill self-esteem and self-awareness through the art of writing. In 1998 This is a Test won the Twelfth Annual Young Playwrights Festival making Shenita and her classmates the first junior high school students to ever win the award. As part of the festival, This is a Test was performed by the company for the local community, and ran for three weeks on the company‘s stage located at Truman College.
The play was chosen because of the raw, no-holds-bar approach to storytelling, as the play‘s director, Greg Kolack, said This is a Test is, ―not just one hour of really dreary, depressing stuff. It‘s an incredible story, an inspiring story, but I don‘t know if it would
17 The festival has been occurring for twenty-two years. In the recent 2008-2009 school year, the festival received 802 entries. 55
be as enthralling without all the humor‖ (Carlozo 1). What began as a classroom activity now reached the general populous and brought awareness to the subject of an adolescent‘s hospital experience as well as her personal battle against cancer. The earlier goals of creating a venue for children and adults to talk to one another regarding death, teaching compassion between doctors and patients, as well as the new goal of awareness, came together full circle. This event made the community aware of Shenita‘s fight against cancer at such a young age. Being the first group of junior high school students to win shows that theatre provides a voice to every age group. Theatre and performance have the unique ability to transcend age, when getting to the root of the story, a personal experience.
I emailed Shenita, now twenty-six years old, to ask if she was glad Mr. Baldwin encouraged her to write the play. She responded, ―I didn‘t really want to talk about what happened to me at the time. I just wanted to be normal. I didn‘t want extra attention.
But it is by far one of the things I am most proud about‖ (Peterson, ―Re: A Grad
Students‘ research on the play you wrote‖ par. 2). She went on to write that she still uses writing as a way to deal with whatever life brings to her. While writing her story, she felt free to express herself to others, to tell everyone her personal battle. Creating live performances from her writing allowed that story to reach a larger audience to experience her battle. The publication of her play in a medical journal bridged together theatre and medicine, similar to the bridge play and performance previously created by child life specialists and hospital clowns discussed in chapter two. 56
When an audience watches a live performance, it becomes difficult to establish distance from that moment when the character remains prominent onstage with very little set. They are not separated by a television screen nor can they get up and change the channel. They are in the room with Shenita, listening to the ―drip-drip of the drugs going into your body,‖ and are having the exact same conversation with God (Peterson 266).
They listen. They absorb the information being given because it given to them both aurally and visually. It is not difficult to pay attention when witnessing the ―clumps of hair‖ being pulled from Shenita‘s head and put into a garbage can, making the impact that performance has significant (Peterson 268). Changes can happen in the way adults and children communicate regarding sensitive subjects when given the common thread of performance. Watching a play such as This is a Test: One Girl’s Fight with Cancer has already shown said impact with the journey it lived. It brought about a small form of change with performances in front of medical interns in an effort to teach empathy. That alone speaks volumes to the use of theatre as a tool to facilitate conversations between adults and children. No other venue has created the bridge of communication between adults and children that theatre has.
57
Chapter 4 ―AUTISTIC THEATRE‖: THE PAST, PRESENT, AND FUTURE RELATIONSHIP BETWEEN THEATRE AND AUTISM Play is the most important element in discovering who you are. Play will lead you right into your deepest desires. ~Keri Smith, Living Out Loud, 8
One out of every 150 children is diagnosed with autism, a neurological disorder that affects how individuals store and process information (Autism 1). Autism prevents the development of individual‘s socialization skills. Also referred to as Autism Spectrum
Disorder or ASD, autism is divided into various degrees on a spectrum ranging from
―high-functioning‖ to the severely impaired. The term ―high-functioning‖ refers to individuals who exhibit signs of the disorder, such as an inability to engage others or make eye contact, but can communicate verbally. Severely impaired individuals cannot communicate verbally and often have uncontrollable, repeated physical outbursts such as arm twitching, hand flapping, and in extreme cases, repeated head-banging against a wall or other objects. A wide range of therapies have been developed to address the various degrees of ASD. For the purpose of this chapter I focus on: 1) individual therapies that practice communication skills with a trained therapist or teacher, 2) social skills classes that involve peer groups, and 3) the recent development of ―theatre therapy.‖ I define
―theatre therapy‖ as autistic children‘s participation in theatrically based activities with
―typical‖ children to learn socialization skills.18
18 The term ―typical‖ is widely used throughout the autistic community and refers to non-autistic children. 58
In the last five years, several theatre companies have designed programs for autistic children and their families in order to teach them how to communicate using creative, theatrically based techniques such as role-play and character development. It was not until the HBO documentary Autism the Musical was released in 2007 that the idea started earning national attention. I believe that theatre has been woven into the autistic community for as long as therapeutic activities have been around because the nature of the activities is largely theatrically based. This chapter traces the elements of theatricality within autistic therapy while bringing to light the progression of theatre‘s relationship to autism. Theatre‘s presence in autistic therapy changed from being used unconsciously to consciously creating performances by autistic actors. Much like the progression of theatre‘s involvement within the hospital experience, children with ASD benefit from activities such as role-play, improvisation, and character development all of which are used in ASD therapy. Through these activities, for example, children with
ASD learn how to recognize and respond to emotions. Furthermore, when involving children with ASD in theatre therapy it benefits the family unit as they learn how to communicate and work with each other as a whole. Performances involving autistic actors benefit the community by increasing awareness and understanding of the disorder.
I believe theatre therapy is moving in the direction of bringing autism to mainstream society to teach others, children and adults, mutual compassion and understanding of this disorder that affects so many.19 This chapter traces the evolution of what I call ―autistic
19 ―Mainstream society‖ defines a typical society. 59
theatre‖ by looking at the progression of theatre‘s relationship with autism throughout various forms of therapy.
Theatre‘s relationship with autism begins with the traditional form of therapy that involves practicing reactions to emotional states with a trained therapist. Autistic children have to learn what a conversation is as they often go on rants when talking to other people instead of participating in a two-way discussion. They do not mean to exclude others, they simply do not know any differently. A therapist teaches them how to pause and reflect on another‘s person‘s thoughts while teaching what emotions look like on the face and body. This is where role-play, an element of theatre, enters. As the child learns to have a conversation with his therapist, she also teaches him how to ―read‖ facial expressions and gestures as they relate to conversation. I compare how children with ASD learn to read emotions to how actors prepare to become characters using
Constantin Stanislavski‘s method acting. Method acting involves actor‘s recalling their own private emotions and applying them to their character‘s situation to become ―real‖ in the moment of the play. Once the child with ASD learns what different emotional states are, they can begin to have conversations with others. This act of learning with the therapist is like the actor‘s character development process.
The relationship with theatre becomes even more developed through the use
―interactive play.‖ ―Interactive play‖ is a theory based on teaching children with ASD how to use their imagination through the use of play. Children on the autistic spectrum have difficulties recognizing and understanding imagination because their disorder tends to make them see situations in terms of ―right‖ and ―wrong.‖ They do not recognize 60
―pretend‖ situations because in their minds ―pretend‖ translates into ―wrong.‖ Interactive play teaches that it is okay to pretend through the introduction of play groups with
―typical‖ children who show them how to imagine and play. It is here that children learn how to be creative and spontaneous while learning how to develop and maintain friendships.
The recent creation of autism based theatre programs brings theatre directly to autistic children and their families. For the purpose of this chapter, I review three programs that use theatre in a conscious, direct manner to facilitate the understanding of emotions. The Rose-Theater‘s ―Autism Action Drama Program‖ in Nebraska,
―Adventure Camp,‖ a summer program held at the Phoenix Theatre in Arizona, and ―The
Miracle Project,‖ in Los Angeles, all of which teach theatrical techniques to help children with ASD communicate in a creative manner. Each program is based on the foundation of theatre and work toward improving children‘s ability to communicate, yet each one accomplishes a different performance based goal. The ―Autism Action Drama Program‖ brings in ASD children‘s siblings to participate in improvisational games to improve communications. ―Adventure Camp‖ allows children on the spectrum the choice to participate in theatre classes with typical children or stay in ones with their autistic peers.
This allows them to boost their confidence by validating their choices while showing their typical peers they are not that different. This creates a bond between typical children and children with ASD because they learn how to work with each other in a fun, creative environment. Finally, ―The Miracle Project‖ creates plays based on ideas the
ASD children develop through improvisation games. The play is then rehearsed and 61
performed for the general public. These performances have gained national recognition for demonstrating that children with autism are capable of communicating their ideas with typical people in a clear and creative manner.
I believe the future of the relationship between autism and theatre involves more productions and the collaboration between autistic and mainstream actors. Theatre based programs should keep progressing to show mainstream society that children with ASD are not disabled; they simply process information differently. What began as an unconscious use of theatre is now moving into a consciously made decision to teach both autistic and typical children they are not as different as society believes. The future of autistic theatre brings the teaching of tolerance, patience, and most importantly, relationship building techniques into the mainstream society.
THE BEGINNING OF THEATRE‘S RELATIONSHIP WITH AUTISM
Learning how to cope with autism can be an overwhelming task for both the diagnosed child and his family. Given the nature of the disorder, communication becomes lost within the family unit. Enrolling a child with ASD into one-on-one sessions with a trained therapist helps families teach the child how to read facial expressions and understand humor. Humor is often misinterpreted by children with ASD as negative, or others‘ making fun of them, especially sarcastic humor. Learning how to interpret the gestures that are combined with verbal humor helps them learn how to break free from the mindset that things are either right or wrong. ASD children have difficulty 62
relating to other people, so simply understanding emotion and by extension other people/children become the focus for one-on-one therapy sessions.20
During one-on-one sessions, the therapist focuses on teaching what an emotion is and how it physically shows itself on the face and body. The focus is also on the intellectual reasoning and motivation behind emotions. In order to accomplish this, therapists use several different tools including charts, pictures (both photographs and cartoons), and graphs to show autistic children what emotions look like. After discussing the images, the therapist begins a discussion regarding why the specific emotion occurred. The child and therapist often reenact situations evoking specific emotions, in a form of role-play. This combination of visual and kinesthetic teaching techniques help children with ASD understand emotional responses, as he not only sees the situation, he feels it. The tools, including pictures, are put into a notebook that can be taken home to practice, essentially becoming a ―script‖ used as a reference point for social situations.
This notebook is a fluid object, after each session the therapist and child add new pages to it based on the techniques learned, while removing ones that have been mastered. This form of practice makes the therapist a ―director‖ while the child becomes the ―actor‖ taking directions and leads from the therapist regarding emotional recognition.
The relationship between theatre and autism becomes stronger with the development of personal emotion. As children with ASD begin to learn what emotions
20 This chapter focuses on how the therapist teaches emotional recognition, both physically and intellectually. When enrolled in one-on-one therapy, the child with ASD also works on physical activities (i.e. occupational therapy, playing team sports, having control of their own body, etc.) and basic life skills, such as study methods. 63
consist of, they also learn to change their mindset from thinking only in terms of negative and positive. In their book, Counselling People on the Autism Spectrum: A Practical
Manual, Katherine Paxton and Irene A. Estay discuss, ―cognitive distortions‖ or learning how to change a child‘s thought process from an immediate negative reaction to pausing to assess what is actually happening. For example, a typical ―cognitive distortion‖ for an autistic child involves ―all-or-nothing thinking‖ meaning that the child ―sees things in black and white, all-or-nothing categories. If you get one mistake in an exam, you see yourself as a total failure‖ (90). This type of thinking hinders children with ASD from making friends, as they think no one else is on the same level as them, rather they believe other children are better or worse than themselves. There is no common ground for the child with ASD to meet others on in order to form relationships. In order to help the autistic child see rules as being fluid, rather than hard and fast, a therapist draws diagrams depicting social situations. An example diagram shows several faces representing the child‘s school mates laughing while a separate, angry face representing the child has a thought bubble containing the words, ―They‘re laughing at me! That‘s not very nice!
Grr!‖ (92). This cartoon demonstrates the automatic negative thinking based on what was initially seen. A second cartoon below the first shows the same situation but has the single face smiling and thinking, ―Oh . . . Maybe they‘re talking about that new movie. . .
Not me . . .‖ (92). This cartoon demonstrates the coping thoughts of pausing to interpret the situation (Figure 1). The angry cartoon face shows the child reacting only to the laughing faces of his schoolmates pointing in his general direction. He believes this to be directed toward him because they are facing him. He does not take the time to think or 64
Figure 1. ―Automatic Thinking vs. Coping Thoughts‖ (Paxton 92). This cartoon demonstrates an example of a visual aid used to help autistic children. It reminds them to pause and think about how to interpret facial expressions on other people. It reminds children with ASD that others are not always reacting negatively to them. 65
listen to their words, as he views the laughter as ―wrong.‖ The coping face demonstrates the child taking a pause in his reactions to think about what the schoolmates could be discussing, and whether their faces angled toward him is just a coincidence. Having a visual reminder helps children with ASD pause before reacting. This cartoon diagram goes into the child‘s notebook and becomes part of the ―script‖ to be used when faced with a similar situation in life. The time reviewing this cartoon and acting it out becomes a rehearsal for the ―performance‖ of going into the ―real world‖ without the therapist (i.e. school and social gatherings) as well as ―character development.‖ Character development in this situation is the study of people and the many emotional responses they could possibly have to various situations. During these therapy sessions time is spent learning and understanding emotion for in order to understand emotion, the child must know how they develop. The child not only learns how to pause to assess situations, he learns how to read other‘s actions and expressions.
Similarly, in preparation to perform different characters, actors learn how to show various emotions using facial expressions and body gestures. They practice a variety of expressions as well as learn the reasons, or motivation, behind emotions. For the story to be performed properly, actors must understand the relationship between the story and their character. When it comes to creating a ―real‖ moment on stage, Constantin
Stanislavski wrote, ―all action in the theatre must have an inner justification, be logical, coherent, and real. Second: if acts as a lever to lift us out of the world of actuality into the realm of imagination‖ (Stanislavski 49). Stanislavski believed that while on stage, an 66
actor must be true to the character, to the moment, and in order to do that successfully, she must draw on her own life experiences to help determine the emotional responses to the present actions of the character. ―Emotion memory,‖ or using personal memories to fuel a staged moment, is what Stanislavski believed gave ―life‖ to characters. This kind of recall must be practiced by actors in order to successfully achieve a believable moment on stage. This kind of emotional recall does not exist for children with ASD because of their lack of emotional understanding. The development of a notebook allows them to have a physical representation of emotion memory to refer to when they need it.
This notebook is similar to the actor‘s script containing dialogue, stage directions, and character interpretation. Much like the child with ASD, an actor needs to initially read the script (situation), determine the character‘s role in it, while recognizing that their interpretation of the character is subject to change based on rehearsals. As an actor prepares for her role by studying the script to find clues into the heart of the character, the autistic child must study the clues regarding the emotions and reactions of people. Actors often keep a rehearsal journal containing director‘s notes and personal development of the character; the autistic child‘s notebook serves the same purpose. Once the research of the story is complete, an actor begins rehearsing their role with other characters in the story. Similarly, once a basic knowledge of emotions have been acquired, which is determined by the progress the child makes in their life outside of therapy, the therapist transitions into practicing ―social stories.‖ 21 Social stories involve prewritten scripts
21―Social stories‖ are detailed further in the following section. 67
involving real life situations the therapist uses to reinforce the progress the child has made regarding emotions. This marks the transition from identifying emotion to using them in the proper manner. The children are no longer pretending to feel something, they learn how to actually feel and more importantly, recognize the emotion they are feeling.
While one-on-one therapy benefits the child by teaching a variety of coping tools, the focus remains on the reasoning behind emotions. Participation in group activities build upon this reasoning to teach what imagination is and what it means to ―play,‖ another foreign concept in the mind of an autistic. Group activities allow children the opportunity to use concepts they have learned in their one-on-one therapy sessions in an environment involving other people. They can see firsthand, live in front of them, the emotions they have looked at in pictures and cartoons with their therapists.
FROM PLAY TO PERFORMANCE
The idea of ―play‖ can be a foreign concept because deficits in social interaction, social communication, and imagination prohibit understanding things outside the realm of truth, rules, and cause and effect. In laymen‘s terms, ASD prevents children from participating in the act of pretending, or creating an imaginary world, because they believe ―pretending‖ to be a falsehood, a lie. Playing and participation in pretend is where most friendships blossom between children; they create a common ground of a made up world to live in, thereby strengthening the bonds of friendship. A lack of imagination creates a barrier between autistic and typical children because they do not understand how or why children their age play; therefore, they do not join them. This 68
leads to feelings of loneliness, isolation, and the general feeling of never being able to fit in for the child with ASD. Theatre, through the vehicle of play and imagination, gives children with ASD the ability to form friendships and combat negative self images.
―Interactive play‖ evolved from the traditional ―play therapy‖ as a way to introduce children with ASD to their imagination as well as teach them how to use it.
Traditionally ―play therapy‖ was used to bring a child ―out of his or her ―autistic state‖ by working through internal conflicts,‖ usually brought on by a traumatic event (Wolfberg
45). This particular form of play therapy was used predominately in the 1960s when autism was considered a psychological disease, similar to schizophrenia. Before medical research proved autism to be a biologically based neurological disorder, many treated it as a psychological one based on childhood trauma. Recent research shows that autism affects the way the brain processes and stores information, without the presence of trauma. While the exact cause of this disorder is unknown, researchers believe it is based on biology, not psychology. Currently, research has no definitive answers for what causes autism, why it exists, and what is the best way to treat it. It has been shown that children with ASD respond to the environment around them, which is why various forms of therapies, rather than medications, have been implemented. Traditional play therapy was used to stimulate a child‘s imaginative state in order to understand how they were coping with the particular traumatic event. Since research on autism has evolved its focus on the neurological reasons, rather than a specific trauma, traditional play therapy is no longer used. ―Interactive play theory,‖ developed in the 1980s when studies found that autistic children responded positively to watching typical children play. This 69
encouraged the idea that interactions with others promotes an ASD child‘s social growth, by stimulating the imagination and teaching the basic idea of what it means to ―play.‖
For autistic children, the idea of playing seems absurd and useless as it is not based on fact. They do not understand why other children pretend to be someone or something else. Interactive play trains the autistic brain to understand why playing and pretending with others is fun, while teaching socialization skills. According to a study by
Jannik Beyer and Lone Gammeltoft, for the typical child the act of playing:
1. Supports the child‘s social understanding: the roles and themes
which are acted out during play develop the child‘s insight into
social rules and conventions.
2. [. . . ] Reinforce[s] and develop[s] their personal experience.
3. [Acts as] a platform for imagination and fantasy where the child
juggles with reality by pretending that certain events actually
happen. (44)
In other words, the act of playing adds to the creation and development of personality, social interaction, and bonds of shared experience. The absence of play prohibits a child from understanding social etiquette, fully developing a unique personality, and understanding the difference between reality and fantasy thereby prohibiting the development of a ―mainstreamed‖ individual. Without play, an autistic child does not have the opportunity to experience interaction with others. However, autism by nature is a solitary disorder; one of the first symptoms is withdrawal from others and lack of eye contact which can develop as early as eighteen months of age. Through specially formed 70
interactive play groups, an autistic child learns from observing typical children playing the reasons why play and pretend are fun and needed in order to make friends. In order for these groups to be effective, children, both typical and autistic must feel comfortable in the environment.
Interactive play begins with a teacher in a place where children naturally play, i.e. school classrooms, after-school programs, recreation centers, and/or the child‘s home
(Wolfberg 51). 22 This creates a sense of familiarity and structure for the child thereby making him more comfortable and willing to participate. During interactive play a teacher uses stories and models to show what it means to play and stimulate the use of imagination in hopes of leading them to understand and explore emotion. Autism prevents social interaction by prohibiting the development of sympathy for another‘s feelings because emotions do not follow explicit rules. As demonstrated earlier with the cartoon, they also have difficulties interpreting body language. Children with ASD have a hard time understanding the connection between what a person says and the gestures made for emphasis. Interactive play shows the child how and why emotions are expressed while demonstrating the cause and effect behind them.
Interactive play begins in an area designed to play and to participate in teacher directed activities (Beyer and Gammeltoft 59). A teacher ―sets the stage,‖ which
―literally means to mark out the ‗stage‘ where play activities take place‖ (59). Creating a designated area for play reassures children by establishing a sense of order and routine to
22 The term ―teacher‖ does not refer to a classroom teacher, rather an adult trained in various therapeutic techniques used to help the autistic child mainstream into a typical social setting. 71
an unfamiliar activity. For an autistic child, this encourages him to step outside of his comfort zone as he accepts that the rule of the area is to play. The teacher provides a box of several types of toys and encourages the child to choose one while she chooses a different toy. The teacher initiates play by using her doll in an imaginative way while encouraging interaction among the child, herself, and the toys. Beyer and Gammeltoft argue that the child benefits more if the adult ―overacts‖ indicating, ―the child‘s behavior is dependent on that of the adult‖ (66). Since autistic children do not recognize emotion they must see an extreme example in order to connect what they see with the reasoning behind it. When an adult ―overacts‖ during a shared game involving toys, the child begins to connect reason with emotion. Beyer and Gammeltoft contend that ―it is essential for the adult to use her body language and facial expression to show that playing should be fun,‖ thereby teaching pretend is fun (68). This teaches children that play is exploring one‘s sense of creativity and providing self-stimulation resulting in enjoyment.
The child learns that rules do not apply to the imagination; some things are done purely for one‘s own pleasure. Once an autistic child makes this connection, he moves into learning how to use his imagination while interacting with others to create a shared experience. This indicates the child is ready to begin playing with other children.
Theatre is evident in interactive play through the designation of acting space versus audience space. When a teacher, ―sets the stage,‖ she is marking an area specifically for using the imagination to play and theaters have designated areas for actors to play their characters, the stage. This designation of areas for actor and audience teaches boundaries for both parties. The audience knows the boundaries of their role — 72
to laugh, cry, applaud — and accept they cannot physically be a part of the production; they may not enter the acting space. This correlates to the role of actor to audience member, as the audience‘s reactions depend on how well the actor performs his role.
Audience members react to moments of incredulity on stage; they laugh when situations become absurd or blatantly humorous and cry when situations become sad and/or moving. Depending upon the proximity of the audience to the stage, the actor must exaggerate his facial expressions and vocal reactions to allow the audience to read them properly; something as small as a raised eyebrow to indicate puzzlement is too subtle to be seen by everyone, especially in a large auditorium. This is exactly what a teacher must do when playing, or performing, for a child in order to get her point across.
Integrated play has created the roles of actor and audience member as well as director for the teacher. A teacher takes on the roles of actor and director as she initiates play and performs exaggerated characters for her audience, an autistic child. Eventually, the child will become an actor as well as audience member by participating in a shared play experience with others. Participation in an integrated play group helps this progression.
In 1992, Pamela J. Wolfberg, an Associate Professor of the Autism Spectrum
Studies at San Francisco State University created ―integrated play groups‖ to observe the affects of supervised play on children with autism. Supervised play refers to the creation of a play based environment (i.e. classroom with toys) for children. She began observing three autistic students when they enrolled in her special education class at age seven.
When the children first came to her, they all exhibited typical signs of autism: little or no verbal skills, isolation from peers, repetitive movements, and attachments to the adults 73
and teachers around them. She spent two months observing how the children ―played‖ on their own before introducing them to play groups. She found that the children made no attempt to engage others; they preferred instead to spin around in circles alone, repeatedly perform chores they enjoyed, or cling to an adult while mimicking their behavior. Wolfberg found that she could engage the students to play with her if she actively initiated involvement. She initiated ―play‖ by having the child echo back whatever she said or did. This kind of mirroring indicates that an ASD child is trying to understand the concept of ―play.‖ This form of engaged play led to conversations between Wolfberg and her students. Once the children became comfortable playing with
Wolfberg, she introduced them to an ―integrated play group.‖ This group consisted of approximately eleven children, four with ASD and seven typical, whose ages ranged from seven to ten. The group met twice a week for thirty minute sessions in a classroom specifically designed for play (Wolfberg 83). Wolfberg observed the children‘s interactions, noting how each child with ASD started out very hesitant and did not know how to initiate interest in playing with the other children. Commonly, the children with
ASD interrupted the typical children‘s game expecting that to be proper indication of a desire to join in. However, the typical children found this to be annoying and shied away from the children with ASD. Once the typical children recognized the ASD children‘s behavior as initiation, they started incorporating them into their games. Moreover, they incorporated their ―outbursts‖ as part of the game. As a result, the children with ASD felt accepted and started learning how to play with other children their age. Over a two year period, the children with ASD learned how to interact with other children, both typical 74
and autistic.23 They maintained symptoms of autism, but they learned how to function with the confines of their disorder and societal rules.
Wolfberg‘s study shows that children with ASD learn the purpose of imagination from others, including typical children, adults, and others autistics. The act of observing others playing caters to the inquisitive nature of autistic children. They tend to be very intellectual and want to learn everything they can on specific subject matters that appeal to them. If the children are put into an environment where they can study other children playing, a completely foreign concept to them, they are more likely to absorb the information and begin to understand it. This was demonstrated when the children in
Wolfberg‘s study began mimicking her behavior as a way to understand what she was doing; they were testing out their own way of doing the behavior in order to interpret it for themselves. Actors also mimic the behavior of others when they are performing in a play; they bring in their own experiences to combine with the character‘s environment in order to create a new character.
As the autistic child grows in his capability to understand emotion, he progresses into learning how to convey emotion for himself. Social skills classes are designed for children with ASD to apply and practice their new knowledge about imagination and emotion. In these classes, children with ASD come together and practice their socialization skills with each other using the techniques put forth in both one-on-one
23 Wolfberg tracked the progression of her students into their high school careers where she found they had become mainstreamed individuals with friends and supported interests outside of school. 75
sessions and interactive play.24 Once the child is ready, as determined by his parents and/or therapist, he enters a social skills class to rehearse ―social stories,‖ which involves practicing how to interact in everyday situations. A social story is simply an everyday situation that mainstream society does not think about, i.e. greeting people at school or listening without interruption to a friend tell a story. These simple situations are often the most difficult for those with ASD as they do not understand why they happen. Once in a social skills class, participants receive picture books containing social stories that outline how to react and behave in various situations. The children use these books as scripts to act out the situations provided. This furthers their development of understanding societal rules and etiquette.
One example of a social skills book is The Social Skills Picture Book: Teaching
Play, Emotion, and Communication to Children with Autism which contains picture stories divided into three sections: ―Communication Related Skills,‖ ―Play Related
Skills,‖ and ―Emotion Related Skills.‖ Each section focuses on a particular skill needed to socialize and each section contains subcategories developed into stories combined with photographs that demonstrate various situations as starting points for basic interaction.25
24 While this chapter traces the evolution of theatre‘s relationship with autistic children, they do not have to have participated in both one-on-one sessions and interactive play groups to attend social skills classes. In other words, children do not move through the therapies discussed in a consecutive manner. It is at the discretion of the parents and based on the recommendations made by physicians and therapists as to what activities the child participates in. All three forms of therapy are offered separately through various autism based programs.
25 This book of social stories is widely used throughout the autistic community, however, there are several other types of books that provide similar information. I chose to use this particular book because of the use of actual photographs versus cartoon images. I contend the photographs help autistic children form a 76
For example, the category ―Starting and Maintaining a Conversation (about the present)‖ has the instructions: ―When you see someone for the first time during the day, say, ―Hi‖ or ―Hello‖ and ask, ―How are you?‖‖ (Baker 46). This simple greeting teaches children the etiquette of social interaction, something they do not recognize as being necessary because it is not based in fact; it is simply a kind gesture. A photograph of a child demonstrating the act of saying ―Hi, How are you?‖ while waving to the other person follows the written dialogue. This gives children with ASD a written dialogue and visual stimulation needed to learn how to engage other people; essentially the story has now become a script. It is here, that social skills classes shift into consciously using theatre to create a rehearsal process.
Upon given this script, the children become ―characters‖ performing the act of greeting each other, while the teacher moves into the role of director, only there to help keep the children on task. Dr. Jed Baker, author of The Social Skills Picture Book, believes that ―social stories provide a theatrical element by allowing the child to see a situation through someone else‘s eyes (i.e. character)‖ (Baker XVI). At this point in therapy, I believe the term ―therapy‖ no longer applies; instead ―social rehearsal‖ becomes more appropriate. The word therapy insinuates the child needs specific help to cope with an emotional situation. This applies to the beginning of the child‘s journey of understanding the complex nature of society and social roles. Once children enter a social skills class, they should have a basic knowledge of socialization; it is now time to
realistic image of what emotion/gestures look like when expressed. Cartoons help lay the foundation for understanding, and the photographs give a concrete reference to reinforce the learning process. 77
practice and implement that knowledge into real situations. Children with ASD rehearse social skills with each other to help bolster their confidence to ―perform‖ with typical children in mainstream society. They no longer need to learn how to react, rather they must practice using the tools they have acquired. This marks a transitional time for the child as he is now able to socialize with his peers, which in turn, builds confidence. This form of social rehearsal allows autistic children the opportunity to see how others like them handle and demonstrate emotions. These rehearsals:
provide the child with a foothold in a social situation and a format for
knowing how to behave in the situation. Using visual aids, social stories
present the child with a series of actions by translating the logic of the
social world into the logic of cause and effect. Social stories thus make
the implicit, unwritten rules explicit. (Beyer and Gammeltoft 82)
In other words, the complex world of society becomes logical to the autistic child by breaking down the reasons and motivations behind the reactions of others. As mentioned earlier, one of the most difficult symptoms of autism is the inability to understand situations outside the logic of cause and effect. Rehearsing common situations through social stories translates social etiquette into a logical and understandable situation. While rehearsing, the children become actors learning how to understand and communicate emotions through the rehearsal process of role-play.
Role-play helps to teach children with ASD how to interact, and most importantly what kind of reaction is appropriate to a given situation. In terms of social communication, role-play demonstrates social interactions using imagination. Children 78
with ASD ―have problems with nonverbal aspects of communication such as conveying and comprehending intent with gesture, facial expression, eye gaze, and intonation of voice‖ (Wolfberg 20). The script used in social skills classes includes gestures and movements the character should make with each line of dialogue, showing the child the connection among facial expression, body movement, and verbal dialogue that he cannot make on his own. In her book, Interactive Play for Children with Autism, Diana Seach states:
Drama sequences and the use of narratives provide children who have
autism with a structure for understanding ‗role‘. Taking on a role helps
them to develop an awareness of how others might be feeling and at the
same time it develops skills in communication, decision-making, and
cooperation. (20)
Role-play allows for the development of sympathy for others, not only to understand the reasons for the reaction, but also to understand the appropriate response to said reaction.
Instead of having an immediate negative response, the autistic child learns to pause and assess the others‘ motive before making his own reaction. Actors go through a similar process when developing a character for the stage. An actor strives to not only become a different person experiencing different emotions and states of being, but also to convey these emotions and situations to an audience. Role-playing allows a safe haven for the child to experiment with emotion as he can become another character, seeing the world through another‘s eyes. In her book, Acting for Kids on the Autistic Spectrum, Alisa
Wolf states, ―Although the child may be verbal, he may not possess the language skills 79
necessary to spontaneously communicate emotional states. It allows the child to practice skills in a controlled environment and to build his self-confidence‖ (18). Wolf argues that autistic children become more comfortable expressing emotion while being protected by the character being portrayed. Once a character‘s reactions have been mastered, they will begin to communicate feelings on their own, much like hospitalized children using conversational puppetry. Wolf also states the benefits of being an observer while role playing arguing, ―The child with autism gains valuable practice at identifying a character‘s emotion, feelings and body language by combining the non-verbal communication that gives us information about a particular situation‖ (25). While participating in role-play during social rehearsals, children become active observers of others‘ body language in reaction to themselves. Practicing social situations through role-play allows the autistic child to log the information needed regarding everyday life skills, leading to better communication, while expanding on the use of the imagination.
Social skills classes become a microcosm for the larger mainstream world the autistic child eventually enters. As an actor collects various ―tools‖ for learning how to create a character, the autistic child collects ―tools‖ for entering a social world that may not always make sense to them. Up to this point in the journey, children with ASD have been observers in the process, learning the ‗how‘ and ‗why‘ of everyday situations. The transition into role-play marks the transition into comprehension and application of the ideas brought forth. Theatre has helped give them the knowledge they need to understand how typical children react and think. Now it is time for typical children to 80
learn how autistic children react and think. This leads to the development of performance based ―autistic theatre.‖
―AUTISTIC THEATRE‖ AND THE INFLUENCE ON COMMUNITY
The introduction of autistic theatre programs fosters the continual growth and development of children with ASD while providing a platform for mainstream performances. These programs have been created by professional theatre companies in collaboration with various autism advocate groups in order to offer extracurricular programs in which autistic children can be involved. For many parents of autistic children, it is difficult to find outside activities their children can participate in due to the specific demands of autism. Many mainstream programs have neither the staff nor skills to cater to potential autistic outbursts. These theatre programs have been designed with this in mind and combine professional staff trained in theatre as well as the needs of autism. This collaboration between theatre and autism allows children with ASD to explore the basics of human emotions, try out different personalities and characteristics, and learn to see varying viewpoints, while providing continuous stimulation for the imagination and practice of play. Autistic actors, who participate in theatre programs also learn about performance and receive the added benefit of self confidence by being a part of some type of performance.26 Typical audiences who witness performances by autistic actors, learn to see the performers as ―normal‖ instead of autistic. Several theatre
26 The term ―autistic actor‖ refers to children who participate in specific theatre programs resulting in performance. 81
companies in the United States have started autistic theatre programs. This section focuses on three programs with different approaches to accomplishing their common goal of increasing the general public‘s awareness of autism while boosting the confidence of the ASD children in their programs.
The Phoenix Theatre‘s summer program ―Adventure Camp‖ provides a unique opportunity for the autistic actor. In the morning, classes focus on basic acting skills and improvisation and combine autistic actors with typical actors. In the afternoon, the autistic actor may choose the classes in which to participate by continuing in the mainstream class or attend ones designed solely for autistic actors. Each set of classes focus on creating performances based on dance, scene work, and puppetry. Allowing the child to choose which group he works with empowers him while validating his decision making skills, a unique goal of the Adventure Camp. This boosts the autistic actor‘s confidence by reinforcing his decision making skills, because it allows him to choose where he is most comfortable. This choice also shows typical actors the normalcy of the autistic actor as he is participating with them in the same activities.
The benefits of mainstreaming with typical actors are twofold: 1) it creates a sense of being ―normal‖ and 2) it teaches tolerance and patience to both parties. As in the interactive play groups discussed earlier, both typical and autistic children have to learn how to interact with each other around the deficits of the disorder. Here, the autistic child has an opportunity to see firsthand how people act and react to each other. Not only does he participate in role-play and character development, he learns how to talk to people on a basic social level. The common ground of theatre allows bonds of friendship to 82
naturally form through play and imagination. This helps build the autistic actors‘ confidence as he begins to inherently participate and understand social norms.
Adventure Camp was created in 2008 at the request of parents looking for a summer arts program for their autistic children. The Phoenix Theatre had several doubts as to whether they would be capable of hosting such a camp. The camp was created in collaboration among the Phoenix Theatre, the Southwest Autism Research and Resource
Center, and parents of autistic children. In a paper regarding the introductory 2008 run of the summer camp, Gary Minyard, Director of Education at Phoenix Theatre, wrote:
Seeing how all of the campers clapped and cheered for their fellow
Adventure Stage campers melted my fears away. In those moments of
celebration, when our differences make us all the same, I realized that this
program was successful at not only achieving the goals we had set out to
reach months before, but that theatre itself has the power to bring all of us
together. Both typical peer campers and Adventure Stage campers grew
enormously by the close of camp, learning from each other valuable life
lessons. (2)
Minyard saw that theatre created a link between autistic and typical children. It gave them a common ground to relate to and learn about each other. What started out as an experimental camp has blossomed into a reoccurring place for both autistic and typical actors to come together and learn about each other through their exploration of acting and performance. This camp became more than acting classes; it became life classes. Actors, both typical and autistic, learn boundaries and how to work through tasks as a team by 83
working on scripted plays with one another. This camp has taken the step to showing mainstream society that autistic theatre is no different than mainstream theatres. What began as an experimental camp has blossomed into a reoccurring place for children to meet and learn about one another.
Nebraska‘s Omaha Theater Company received a grant from the Autism Action
Partnership, to create twelve-week workshops designed for autistic children and their typical siblings. Similar to Phoenix‘s Adventure Camp, the classes focus on theatre techniques including improvisation, games, and script work, including character development and the performance of memorized lines. The difference here is that the children work with their siblings, thereby strengthening the family unit. They learn what it means to ―act‖ and how to prepare for a role by studying a fictional script, different from the social stories they may have used before. Instead of photographs they must use dialogue and stage directions to determine how to perform the characters. While doing this, the autistic actors share the experience with their sibling(s) creating a stronger bond between them as they begin to recognize why each acts the way they do. Using the script as a medium, the autistic actor learns how to assess situations and choose their reaction to it while their typical sibling learns the methods behind the autistic actor‘s reasons, and both learn how to better communicate with one another.
At the end of the twelve-week session, the actors showcase the various techniques they have learned in a performance for their families. This allows the actors to feel a sense of accomplishment by not only talking about their talents, but showcasing them.
This showcase not only strengthens the actor‘s self-esteem, it strengthens the family‘s 84
pride and confidence in their child. When parents of the autistic actors were asked to give feedback regarding the program, one said, ―He was much more open to risk and to try new things [and he] talks about the friends he made. [It] helped with self-confidence and playful nature‖ (Rose Theater 2). This particular child was able to open up and learn how to play by becoming an actor, who by nature, plays. Another parent said, ―Mark has become more ‗telling‘ meaning remembering and explaining, not just the usual he
‗recites‘ to us‖ (2). For Mark, as well as all autistic children, the ability to express his own thoughts is an incredible accomplishment. Autistic children have difficulties explaining themselves properly and often just recite the facts of any given situation rather than share their own perspective. Acting also teaches autistic children how to communicate by giving them tools to starting a conversation. When they practice character development, they are practicing having conversations. They learn how to state their thoughts and how to pause and listen for the other person‘s reaction. Through this theatre program, family members were able to see another side of their child(ren) — the imaginative side — while learning communication techniques they can incorporate at home. The parents see how becoming a director, the same way the theatre teacher did, benefits their child‘s learning process. They see that taking the time to show the choices and logical steps, based on a script (the situation) helps their child interact with others.
Theatre classes at the Rose Theater provide knowledge and tools for families regarding communication and choice-making rather than entertainment alone. This program uses theatre to bring together the families and communities of autistic children. 85
The Miracle Project, a Los Angeles based program, was created by Elaine Hall, or
―Coach E‖ as she is called, to help her communicate with her non-verbal autistic son,
Neal. From her experience as a children‘s acting coach, she realized the positive impact theatre could have on communication between families of autistic children. The Miracle
Project has taken autistic theatre to another level by creating performances by autistic children for a mainstream audience. The Miracle Project defines itself as being ―a musical theater and video arts program for children of ALL abilities celebrating music, dance, story, and culture‖ (The Miracle Project). This means they cater to the needs of all children, autistic, typical, as well as other disorders and disabilities. The Miracle
Project prides itself on making theatre and the arts available to all, as they should be.
Similar to the Rose Theater, this program offers twelve-week sessions open to autistic children and typical siblings and peers, but differs by producing original plays the children create with a team of theatrically trained teachers and volunteers. This creative process differs from the school play atmosphere because it is performed for the general public, not just the children‘s school community. This allows for a more diverse audience to see and learn from the production. Another unique aspect to this program is that the entire family plays a role in the final productions through costume design, set design, box office help and more. This involvement of the entire family allows time for them to bond together in a creative way. They are removed from their day-to-day lives and immersed in an imaginative environment where family members can learn about each others‘ strengths rather than focus on their weakness- autism. This helps both the 86
typical and autistic family members grow strong together as a unit as the focus is on the positive rather than the negative.
Each production‘s storyline is a result of issues that emerge through various improvisational games and brainstorming activities done early on in the session. Since there are children on all parts of the spectrum in the sessions, each child‘s role is created based on their personal needs. For example, if the autistic actor is unable to verbally communicate, he may perform a dance or hold up signs relevant to the performance. The goals of the program are to illuminate every child‘s ability, and break society‘s focus on
ASD children‘s inabilities that create stereotypes of autism.
In 2007, The Miracle Project was showcased in the award winning HBO documentary, Autism: the Musical. The documentary followed five autistic children through a twelve-week session that concluded with a performance about time travel. The documentary showed successfully that autism is a disorder rather than a disability; it presented the children as completely functional within societal rules, when encouraged to be themselves. For example, for Wyatt, a featured child in the film, being a sixth grader in a mainstream school meant facing bullies every day. It was through an improvisational activity that the issue of bullies came to life. Coach E allowed Wyatt to become the bullies he faced, empowering him to take control of his situation and fight back, with words. This gave Wyatt confidence in knowing that if he could not physically stand up to the bullies, at least he was able to talk about it with others. In the film, he also began to acknowledge his particular social deficit, that he pulls into his ―own world‖ and cannot ―make friends there.‖ Through the medium of theatre, Wyatt began to realize 87
he could talk to people about his experiences, and more importantly, other people would listen.
The final performance shown in Autism: the Musical centered on time travel and focused on particular issues the children were having. With The Miracle Project‘s musical director, Wyatt wrote and performed the song, ―Sensitive‖ about his experience with bullying.27 Since the production, Wyatt has gone to several events and screenings of the documentary to talk about his experience with autism. He also was invited to talk to a class of eighth-graders as a way of sharing understanding and tolerance. Wyatt‘s confidence has grown as a result of his initial participation with The Miracle Project so much that he has said, ―You can‘t say what autism is. I might have autism, it might be an inch of autism where some people have a foot of autism and some people have a mile of autism. Or people have a millimeter of it. It doesn‘t really have a meaning. It‘s just a word‖ (www.hbo.com). This explanation of his disorder demonstrates that he has come to terms with it. Not only does he acknowledge his disorder, he is taking control of it, rather than letting it control him. He does not see his disorder as a hindrance, it is simply a part of who he is. Wyatt started out as being reluctant, and inside his own world, when he first entered the session at The Miracle Project. Through acting, he learned how to express himself and how to communicate with others while showing the value of compassion and patience. He is just one of the many children The Miracle Project has helped. They are using the power of theatre to empower children of all needs to take
27 Wyatt‘s song ―Sensitive‖ received national attention when he recorded it as a duet with actor/musician Jack Black for The Miracle Project‘s album, Fly released in the fall of 2008. 88
control of their life and use their abilities to entertain and create, instead of letting it control them. The performance value of this program is helping to increase awareness of children, theatre, and tolerance to a wider community. This program takes performance to a teaching level, by showing the capabilities of children who have been previously labeled as ―different‖ as being ―normal.‖ While the involvement of typical peer groups helps to further teach autistic children social interaction, at The Miracle Project, a venue of communication, tolerance, and creativity is created.
THE FUTURE OF AUTISTIC THEATRE
Theatre has been woven into the therapeutic techniques used with children of
ASD, but until recently, has not been defined. In the past, therapy with autistic children focused on the use and creation of a notebook containing ways to handle various social situations involving emotions and reactions. In order to understand emotion, therapists use cartoons and photographs demonstrating facial expressions while discussing the intellectual reasons behind them. An autistic child needs to understand motivation first in order to process emotion. Once this has been properly explained, imagination can be introduced, another foreign concept to the child.
Imagination occurs naturally for most children, however, like that of emotion, it needs to be properly explained and rehearsed with children with ASD. This means that a teacher or therapist must step into the role of ―director‖ to initiate ―play‖ with the child.
Once the child has rehearsed play in a creative environment he becomes ready to move into integrated play groups. Currently, children do not move from one form of therapy to 89
another consecutively. Instead they participate in the ones available to them through their school and/or available advocacy groups. I believe that involving children in a through- line of therapies from one-on-one to integrated play groups, etc., can help them progress in their development even faster. In play groups the autistic child learns how others play and how he can become a part of a new, shared, imaginative world. During this shared experience, typical children learn tolerance and other‘s points of view just as an audience would see after watching a performance. Each party involved takes away another person‘s situation and reactions to the world.
When participating in a defined theatre program, an autistic child becomes an autistic actor where he learns to explore different personalities, emotions, and stories. He learns how to recognize and react to situations life brings through the actions of his character. While his confidence grows stronger, others around him learn that he is a normal child that thinks differently.
Autistic theatre needs to continue pushing forward by allowing its actors to showcase their talents in front of a wider audience. Not only will this bring about social change, it will teach compassion to a larger group of people. Autism is currently a ―hot topic,‖ as more and more children today are being diagnosed as being on the spectrum.
The issue is no longer what to do with these children; it is how we showcase their abilities. Theatre creates a comfortable atmosphere for both the autistic actor and the mainstream audience to listen and learn to understand the reasons behind the choices each makes.
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Chapter 5
CONCLUSION
This thesis explored how theatre maintains a predominant presence in the lives of children who are hospitalized and/or facing life altering disorders through both indirect and direct forms. Most people regard theatre as live entertainment performed on a traditional stage complete with audience seating and elaborate set designs. I believe, however, that theatre is more than entertainment; it is a vehicle for knowledge, voice, and change. For children, theatre becomes an outlet for them to express their emotions; it is a creative spark for them to relieve the mundane routine of hospital life; and it is a place for them to learn how people different from themselves think and react. Theatre is an educational tool, a form of empowerment, and a venue for communication to start. The preceding chapters focused on how individual forms of theatre found in unlikely places, such as hospitals for terminally ill children and classrooms for autistic children, empowered children to speak their truths while helping adults listen.
Children admitted into hospitals due to illness lose a certain amount of power and control over their bodies. This has a damaging affect on a developing child‘s self-esteem.
For years, child life specialists have been employed by hospitals to help maintain a sense of normalcy by creating games and activities that promote natural emotional and mental development. Without realizing it, child life specialists integrated theatrical elements into their activities, namely, conversational puppetry and play. ―Play,‖ a reoccurring theme throughout this thesis that takes on many definitions, closely aligns itself with theatre to teach children socialization and communication skills in a natural way. For 91
example, child life specialists found that children reveal more information about themselves and their emotions when completely immersed in situations. The use of conversational puppetry helps children become comfortable by creating a character to hide behind. When given a puppet, children tell elaborate stories, placing the character
(puppet) into situations similar to ones they face in their own lives. Because they are able to lose themselves in the character, they show emotions that they otherwise would not.
Children admitted into hospitals have to combat many new, uncomfortable issues including being in a strange environment, meeting several different people, and enduring procedures that may hurt and that they may not fully understand. They transform from being a normal, healthy child into a patient, sometimes overnight. Adults have a hard time processing this situation, let alone a child. Theatre, through the child life specialist, allows the child to explore the boundaries of his situation while sharing private emotions.
The child life specialist takes this information back to the family, and together they learn how to communicate more effectively.
The use of theatre as a vehicle for communication allowed Shenita Peterson to express her hospital experience to a large audience, including peers and future doctors in teaching hospitals. Her play may not have been created if not for the encouragement of her drama teacher, Mr. Baldwin. He recognized Shenita‘s need to express herself, even before she did. As a drama teacher, he knew the positive effect performance and theatre has on children‘s ability to communicate. He, like the child life specialist, helped Shenita develop her natural ability to communicate through performance. The difference between them is that Mr. Baldwin used theatre in a direct, conscious manner for Shenita. 92
Writing her play gave Shenita the freedom to express herself as herself through the life of a character on stage. Shenita shifted from using characters as a shield, as we saw children with child life specialists do, to putting herself directly on display. This raw form of emotion became a powerful tool of communication between Shenita and her classmates, Shenita and the medical community, and Shenita and her local community.
This is a Test: One Girl’s Fight with Cancer was published in a medical journal and consequently performed in front of medical students to teach empathy, also won a local playwriting contest resulting in a performance for the surrounding community. What started out as a simple class project/cathartic exercise became a vehicle for communication and change. This direct form of theatre became Shenita‘s voice and effectively shared her feelings in a way that others, specifically adults, heard. She no longer played the part of an adolescent patient with bone cancer trapped in a hospital bed; she became a young woman voicing her concerns about the fair treatment of adolescent patients. As a result of having her voice heard, and more importantly, acknowledged,
Shenita became even more confident, eventually studying medicine in her adult life.
Hospital clowns also use theatre directly by putting the child into the role of director and themselves into the role of actor. Though hospital clowns have several routines and tricks to use when entertaining the child, they always make sure to follow his lead and direction. For the time spent together, the child controls the direction of the clowns by telling them exactly what he wants to see, which empowers the child as a validated decision maker. This empowerment follows the child into other aspects of his hospital life, including making important decisions about treatments, dying, etc. 93
For the child diagnosed with autism, play and communication become difficult and sometimes near impossible acts in which to participate. Theatre, first developed in the use of role-play with one-on-one therapists, helps autistic children learn how to socialize with others by giving them the opportunity to practice and rehearse emotional states. Theatre‘s involvement in the autistic community continued into ―interactive play groups‖ integrating both autistic and typical children. Here, imagination and creativity are taught naturally through the art of imitation. The autistic children were able to observe typical children and eventually begin to understand what it means to ―imagine.‖
The typical children also learned to have patience and empathy for people who appear to be different. Each group learned how to imagine and create situations of performance, while identifying what it means to ―play.‖ Play groups led to the creation of theatre programs specifically designed for autistic children and their families. Here autistic children became actors, learning not only how to identify emotions, but also how to express their own feelings through their art instead of only reiterating facts or statements made by other people. This was demonstrated by Wyatt‘s growth during the production of Autism: the Musical. Through the process of participating in The Miracle Project‘s theatre program, he became empowered to take control of his autism rather than letting it control him. He knew and acknowledged that he was ―different‖ because of his autism and that he sometimes went into his ―own world‖ without understanding why. Through the process of playing improvisational games and brainstorming ideas for the project‘s final performance, he realized he was ready to make friends. This direct use of theatre, much like the performance the hospital clowns bring in to the hospitals, allowed Wyatt, 94
and others like him, to embrace their differences and take whatever control they can over it.
Theatre has proven itself to be more involved in the lives of children than originally thought. Throughout history, playwrights have chosen theatre as the venue for voicing their opinions on the state of society. For children there needs to be an adult willing to listen and help them through the process of creating a performance. For children in hospitals, it is the child life specialist and hospital clowns. In school Shenita had her drama teacher, Mr. Baldwin, and children with autism need more therapists and teachers willing to actively incorporate theater into their programs. Each of the stories presented have shown the powerful effect theatre made in the lives of children. This, however, is not enough. We need to see more adults help children get their stories out. It is often said that children are wise beyond their years. If that is true, and I believe it is, then their stories deserve to be heard. Their stories could lead to social change. Social change is marked in terms of having a large audience witness a point of view so strong, it makes them think differently. We have already seen small changes happen through the performances of This is a Test, and the documentary Autism: the Musical. This is not enough. More performances based on personal stories means that children in hospitals could be included in decisions about their medical treatment. For children with autism, it means showing that they are not as different as everyone thinks, they simply process and reveal information in their own way. Children are no different than adults; they need to feel validated and recognized as individual people, not members of a disease or disorder.
The future of theatre‘s presence with children facing disease or disorders involves 95
consciously made decisions to incorporate performance, no matter how small, into their life. The results will no doubt be as powerful as the ones demonstrated throughout this thesis. The more children contribute to performances about their situations, the more adults will stop and listen.
96
WORKS CITED
Adams, Patch. ―Ideas of the Gesundheit! Vision of Health Care: Vision of a Hospital
Based on Fun and Friendship.‖ 02 October 2009.
Autism. Omaha: Autism Action Partnership. 2009. base/igstemplate.cfm/SRC=DB/SRCN=/GnavID=16/SnavID=6/TnavID=1> Autism the Musical. Dir. Tricia Regan. Prod. Bunim and Murray. DVD. HBO Documentary Films, 2007. Autism Treatment Center of America. 1998-2008. The Option Institute and Fellowship. 30 August 2009 rise/what_is_the_son-rise_program.php.> Baker, Jed. The Social Skills Picture Book: Teaching Play, Emotion, and Communication to Children with Autism. Texas: Future Horizons Inc., 2001. Baldwin, Gene. ―Re: This is a test . . . questions about the play.‖ E-mail to Jennifer Faller. 29 June 2009. Beyer, Jannik and Lone Gammeltoft. Autism and Play. London: Jessica Kingsley Publishers, 2000. Bottoms, Stephen J. ―Solo Performance Drama: The Self as Other?.‖ A Companion to Twentieth Century American Drama. Ed. David Krasner. Massachusetts: Blackwell Publishing Ltd., 2005. 519-535. Carlson, Marvin. ―What is Performance?.‖ The Twentieth-Century Performance Reader. Eds. Michael Huxley and Noel Witts. 2nd edition. New York: Routledge, 2002. 146-153. 97 Carlozo, Lou. ―Her Biggest Test of All: High School Student Battles Cancer and Lived to Write About It.‖ Chicago Tribune 14 January 1998, sec. Tempo: 1. Child Life Council. 1998-2009. Child Life Council. 1 January 2010. Child Life Council. 1998-2009. Child Life Council. 18 January 2010. ession.cfm. Child Life Council Committee on Hospital Care. ―Child Life Programs for Hospitalized Children.‖ Pediatrics. 76:3 (1985): 467-470. Child Life Council Committee on Hospital Care. ―Child Life Services.‖ American Academy of Pediatrics. 118:4 (2006): 1757-1762. Department of Communications. ―Historic Mission, Progressive Vision: 170 Years of Caring for Our Community.‖ Cleveland: The MetroHealth System, 2007. Edson, Margaret. W;t. New York: Faber and Faber Inc., 1993. Garner, Stanton B., Jr. ―Introduction: Is There a Doctor in the House? Medicine and the Making of Modern Drama.‖ Modern Drama. 51:3 (2008): 311-328. HBO Documentaries: Autism the Musical. 2010. documentaries/autism-the-musical/bios/wyatt/index.html>. 2 April 2010. HealthLink: Medical College of Wisconsin. 2003 December 2006. 98 Levetown, Marcia, et al. ―Communicating with Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information.‖ Pediatrics 121.5 (May 2008): 1441-1460. reprint/pediatrics;121/5/e1441.pdf>. Maguire, Erin. ―Theater Offers Drama Program for Children with Autism.‖ The Bulletin. 12 February 2009, sec. Local State: 1. ―Play.‖ Merriam-Webster’s Pocket Dictionary. New Edition. 2006. McCarty, Karen. ―Serious Foolishness.‖ 20 February 2010 circus.org/KarenMcCartyStory.aspx>. McCormick, Cynthia. ―They Care Enough to Clown Around: Harwich Jokester Takes His Act to Hospitalized Kids.‖ Cape Cod Times. 16 July 2009. McCue, Kathleen. ―Medical Play: An Expanded Perspective.‖ Child Health Care. 16:3 (1988): 157-161. Miller Van Blerkom, Linda. ―Clown Doctors: Shaman Healers of Western Medicine.‖ Medical Anthropology Quarterly. 9:4 (1995): 462-475. Paxton, Katherine and Irene A. Estay. Counselling People on the Autism Spectrum: A Practical Manual. London: Jessica Kinglsey Publications, 2007. Peterson, Shenita, et al. ―This is a Test: One Girl‘s Fight with Cancer.‖ Literature and Medicine 17.2 (1998): 255-279. Peterson, Shenita. ―Re: a grad student‘s research on the play you wrote.‖ E-mail to Jennifer Faller. 17 April 2009. 99 Phoenix Theatre. 2007: Phoenix Theatre. 29 August 2009 com/Uploads/PT%2oConnections/The%20A>. Plank, Emma N. Working with Children in Hospitals. Cleveland: Western Reserve University, 1962. Ricci, James. ―A True Rite of Passage.‖ Los Angeles Times. 23 December 2007, sec. B1. Seach, Diana. Interactive Play for Children with Autism. New York: Routledge, 2007. Simpson, Richard, Brenda Smith Myles, Gary M. Sasso, and Debra M. Kamps. Social Skills for Students with Autism. Virginia: The Council for Exceptional Children, 1997. Stanislavski, Constantin. An Actor Prepares. New York: Routledge, 1964. The Hospital Clown Newsletter. Ed. Shobhana Schwebke. 22 November 2007. Clowns in Community and World Service. The Miracle Project. 2008: The Miracle Project. 29 August 2009 miracleproject.org/who.html>. Theatre Horizon. 29 August 2009 autism.html>. Thompson, Richard H. and Gene Stanford. Child Life in Hospitals: Theory and Practice. Springfield: Charles C. Thomas Publisher, 1981. Towsen, John H. Clowns. New York: Hawthorn Press, 1976. United States. Nat‘l Education Association. The Puzzle of Autism. Washington DC: GPO, 2006. 100 Wolf, Alisa. Acting for Kids on the Autistic Spectrum. New York: iUniverse, 2005. Wolfberg, Pamela J. Play and Imagination in Children with Autism. New York: Teachers College Press, 1999.