Are You Curious?

Have you ever walked down a street and watched people pass by and for some reason you wanted to know their story?  You wish you could stop them and ask, “What are you thinking about?  Is this a good day or a bad day?  Has life been easy or hard for you?  Why are you here in this city on this day at this time?”  The summer before I started writing this book, I was in New York City, strolling down The Avenue of the Americas, and I couldn’t keep these questions out of my mind.  Who is that woman crouched over, carrying two heavy bags with sadness in her eyes?  What is her story?  What baggage do you carry from your past?  Where did you find the strength to carry on?  Or the young woman who looks as if she has her life together.  Is it an emotional façade?  Are you hiding anything?  The teen with tattoos and body piercing.  Tell me about yourself.  What were you like in 3rd grade, 8th grade, and high school?  Did any of your teachers try to connect with you when you were in school?

What does it mean to be a student in American schools?  Who are these students walking through the doors of our classrooms?  Are we prepared for their stories?  Interestingly, the Avenue of the Americas and the surrounding area is the home to some of the most prestigious publishing houses in the country.  Authors have entered those offices with their stories to share and, fortunately, the editors had the courage and foresight to publish these wonderful Life Story Books so that we can learn from their experiences.  I believe that the echo of their life stories reverberated around me and raised my awareness of the characters that passed by as I walked down the street.

I am curious and wonder about the childhood and adolescent experiences of people who are well known or celebrities.  The actor Robin Williams comes to mind.  What was he like in 3rd grade?   When the teacher asked him a question, did he give an answer in a stream of consciousness with quickness and wit?  Did his teachers appreciate his mind?  How about the risk takers of the world?  Think about John Krakauer who wrote the book Into Thin Air: A Personal Account of the Mt. Everest Disaster (1999) where he retold his harrowing excursion up Mt. Everest.  Was his energetic dare-devil escapades seen as a strength or a weakness by his teachers?

I wonder about those people who have faced challenges or tragedies in their lives.  Can I ever understand the pain of the family walking up the church steps for the funeral of their 16 year-old daughter who committed suicide?  Or, tell, me young man in the wheelchair, what was it like when you found out that you would never walk again because of the bicycle accident?  Or, 5th grader, what does it feel like to have a neck and face tic and not be able to control it? Why, little 4 year-old, do you find comfort in covering your ears and rocking back and forth?  Or, my 15 year-old friend, what did it feel like to live in six different foster homes?

But if you were raised by your parents as I was, you were taught to “be polite.”  To them it meant not to stare at anyone who was different from me, a white, able-bodied middle class Italian-American girl growing up in a family of eight children.  I learned to turn away or stare straight ahead when I saw a child who was using crutches, who used sign language, who spoke a different language, or had a different shade of skin color.  However, it was these people who sparked my curiosity and that curiosity was not satisfied as a child.  “Don’t ask questions.  That would be rude.”  While my parents’ intentions were positive and represented the era when I grew up, this lesson on politeness was counterproductive because my understanding of differences and diversity was limited.  Staring straight away meant the person with differences was invisible, not present, someone to be ignored.  How could I possibly form a relationship with an invisible person?  I think my parents underestimated what children could understand about differences and how information and knowledge takes away the fear of differences, demystifies the differences, and can foster genuine acceptance not just tolerance.  Luckily, we live in a different time.

As teachers, you will be working with children and families who represent a wide spectrum of differences.  Some of you will bring with you a vast range of experiences of diversity in your own background; others will be limited by your own life experiences.  That is OK.  This book is meant to serve as a guide to “walk in the shoes” of many other people whose life experience may be similar to your own or may be very different.  I like to use the metaphor about curriculum that Emily Style uses (1996).  She is co-director of the Seeking Educational Equity & Diversity Project on Inclusive Curriculum, known as S.E.E.D., at Wellesley College in Massachusetts and her words speak to me in a profound way.  She says, “Curriculum is a window and a mirror.”

Education needs to enable the student to look through window frames in order to see the realities of others and into mirrors in order to see her/his own reality reflected.  Knowledge of both types of framing is basic to balanced education that is committed to affirming the essential dialectic between the self and the world.  In other words, education [should] engage us in ‘the great conversation’ between various frames of reference. (¶ 8)

Form an image as if you are in the mind of these people:

• You wake up and look around and try to remember the name of the foster mother with whom you are living. 
• After school, you walk to a homeless shelter while your classmates walk to their houses and apartments. 
• You are a new parent who is given the “news” that your child has a severe disability. 
• You are walking down the corridor of your high school and you are not sure if you heard someone say, “Fag.”
• You apply for a job and are told it is taken and then a white friend applies after you do and gets the job.

Now imagine picking up a mirror and the image you see is someone whose life reflects your own.  Your heart beats quickly and you identify closely with that other person because you have so many common characteristics or experiences. You begin to think someone understands how you feel.

We need to experience these multiple perspectives.  Using Style’s metaphor, we can learn to say to others, “From my point of view, this is what I see.  What can you see from your point of view?  Let me try to understand your perspective, your values, your history, your experience.  Let me try to understand your point of view.  How have you experienced the world?  What are your challenges?  What are your triumphs?  What are the supports?  How did your teachers and the educational system help or hinder you?  What has been the impact of your family on you?  In what ways are you resilient?” 

When I began writing Life Story Books: Windows into the Lives of Students and Their Families, I asked myself one question over and over again.  “How can I help teachers and prospective teachers understand the value of reading Life Story Books?”  I wanted to have others love the books as much as I do, to treasure their collection, and share the readings with friends and colleagues.  I wanted the reader to think of these books as making new friends on their path of professional development.  I wanted teachers to say, “What book can I read next?” or a student teacher to remark, “Reading the Life Story Book really helped me understand a child and her family.”  Perhaps, a professor of teacher education would say, “Life Story Books can be an essential complementary resource to the professional texts available to college students.”

What is a Life Story Book?

Tristine Rainer (1997) is a writer and a teacher who has guided her students to write their own autobiographies.  She wrote the book, Your Life as Story:  Discovering the “New Autobiography” and Writing Memoir as Literature.  She recognizes the emergence of the memoir as a dominant form of literature in our country.  In previous eras, biographies and autobiographies tended to be written by and about rich, famous, and historical characters.  She states that this genre of writing has changed.

In fact there has been a trend toward increasing democratization of the genre throughout the centuries, particularly in the United States and especially since the last half of the nineteenth century.  As the form of writing favored by African-Americans and other ethnic minorities, autobiographies carries forward a rich tradition of self-affirmation through finding one’s voice.  It has served as a form of revolution when seized by those whose lives and selves would otherwise be invisible:  women, minorities, immigrants, homosexuals, disenfranchised youth, gang members, the blue-collar father, the romantic eccentric, the elderly, the women and men whose lives have taken the unpaved road, those who have felt silenced—all those who feel the need to bear witness to their truth.  It is a way of saying, “I matter; this life I have lived has meaning!  And because I tell it from my perspective, because I frame it, it has the meaning I give it.” (p. 11)

         Reflection.  At the end of summer 2004, my 18-year old son had a serious blood infection and was hospitalized at Children’s Hospital in Boston.  My contact with the hospital had been minimal up until that time.  My sister had worked at the hospital in the recovery room for about 20 years.  Once I had to bring my daughter to the emergency room to have her cut lip sutured after a bicycle accident.  However, I felt that I knew the hospital in a more intimate way from a patient’s perspective because I had recently read Laura Rothenberg’s book, “Breathing for a Living” (2003).  She wrote her book in the fashion of a journal where she included her entries for two years.  She was an intelligent, brave, feisty, and sensitive young woman who battled cystic fibrosis since she was born.  Laura did not just share her experience, she also had her family members and friends give their perspective of the experience from multiple point of view.  While reading her memoir, I also learned a lot about cystic fibrosis (CF).

CF is a life-threatening, genetic disease that affects approximately 30,000 Americans. Many people with CF do not appear ill and the symptoms of the disease may not be immediately obvious to others. In people with CF, a faulty gene causes the body to produce abnormally thick, sticky mucus that can clog the lungs, pancreas and other organs. This can lead to severe respiratory and digestive problems. (Cystic Fibrosis Foundation, ¶ 1)

              Laura was in and out of Children’s Hospital for numerous treatments and medical crises.  I vividly remembered her describing the Prouty Memorial Garden where she sought a change of scenery from the long days and nights in her hospital room.  The hospital describes it as “an oasis located at the heart of the hospital” (Boston Children’s Hospital).  One day, feeling like a specimen to be examined and poked at by the army of hospital doctors, interns, fellows, and nurses, she went down to the garden to wait before having a medical procedure.

Two hours to kill while I wait to get the PICC placed [peripherally inserted central catheter].  Sit in the garden in the shade, right at the front where all the action is.  A large group of twenty-somethings sits farther away eating lunch—new interns.  I decide to go for it after some coaching from Zucker [her friend] on the phone.

 

“Hello.  Excuse me, you over there, can you listen please?  I’m sorry to interrupt your lunch but I wanted to let you know that my name is Laura, I am twenty years old, I have CF and I’m waiting for a double lung transplant.  So, if you have any questions about internship I am sitting right over there and I’m a professional patient.  It doesn’t have to be about CF, it can be about anything to do with the hospital.” Laughing. 

 

“Would you like to join us?” asks the upcoming chief.

 

“Thank you, but I’m not feeling that well and I’m trying not to do too much talking, so I’d rather just answer specific questions.”  There was a bit more conversation and then more thank you and I went back to my Coke and other belongings.  It felt good, empowering. (Rothenberg, 2003, p. 66)

         Reflection.  As I spent my days at the hospital praying for a speedy recovery for my son, I too sought refuge in the courtyard.  It was just as she described it.  Pathways surrounded by flowers and greenery; seals spouting water in a small wading pool; doctors, visitors, and patients clustered in groups sitting on the grass, the steps, or the café tables; a mother pushing a carriage with her toddler’s head bandaged and holding a stuffed teddy bear; an individual with eyes downcast sitting on a hidden bench in the back corner.  Even though I did not know any of these people personally, I felt an inexplicable bond with them.  And I know that Laura Rothenberg’s book helped me to understand a perspective I would not have had otherwise.  All these people had a story to tell. Laura was one of the brave ones willing to share her story with us.  Luckily, my son’s story at the hospital had a happy ending.  He left after five days on the tenth floor, was fitted with a PICC line to get a continuous antibiotics for a month, and recovered.

Reflection 1.1.   Have you even been hospitalized or visited a family member or friend in the hospital?  What are the sensations you remember?  Was it you or someone else?  When?  Images.  Smells.  Sounds. Feelings.  The medical staff, visitors, other patients.

I invite you on this journey with me as I introduce you to other authors of the Life Story Books that I have chosen to share with you in this guide.  However, we first must acknowledge the “courage” that the authors have demonstrated in writing their stories.  Annie Rogers (1993) who is a psychologist and educator explored the history of the word courage in the English language and her analysis is apt for our readings.

Courage came from the Latin word cor, meaning “heart,” and from a common Romanic word, aetaticum, or “age.”  In its original English form, in 1051, courage meant “the heart of an age.”  Yet by 1300, courage had lost its association with age, and therefore with time and with development.  Taken out of time, courage meant simply “heart.”  In 1300, courage was also linked very closely with speaking.  One definition of courage was “to speak one’s mind by telling all one’s heart (Simpson & Weiner, 1989, p. 1051) . . . .  One way to understand the etymology of courage is to consider its history as a series of losses . . . In other words, courage was slowly dissociated from what traditional Western culture considers “feminine’ qualities, and came to mean that quality of mind that shows itself in facing danger without fear or shrinking,” a definition associated with the bravery and heroism of boys and men. (Rogers, 1993, p. 271)

I believe the authors of the Life Story Books show courage of the heart and the mind.  First, they are speaking from their souls, sharing their most intimate thoughts and experiences with the reader.  They are exposing themselves and their families with people they do not know.  The authors do not always view their worlds through rose colored glasses; we may see the dark side of their lives and personalities. 

Second, they take the risk of speaking about subjects that often are hidden or are secrets in families or our culture.  They do not “shrink from the danger” of this exposure because they feel so strongly that others can benefit from their storytelling.  They have chosen to speak the truth as they know and live it.  As a result, they put themselves in the way of possible criticism, judgment, and discrimination by sharing their stories with others who may not share their perspective.

Third, some of the authors describe the courage of others and how the characters faced challenges and adversity.  In 1991, Reed Martin, a disability rights lawyer, worked on numerous court cases and some went as high as the U.S. Supreme Court.  He wrote the book, Ordinary Children, Extraordinary Lives:  Stories Behind Special Education Case Law that tells the story about twelve important court cases that were meant to interpret the intent and implementation of The Education of All Handicapped Children Act that was passed by Congress in 1975.  Not all the cases were found in the favor of children with disabilities but, even so, the drama of the cases was quite compelling.  Eventually, some of the court cases led to policy revisions of the law and ultimately had an impact on the reauthorizations of the law which led to what we now know as the Individual with Disabilities Education Act—I.D.E.A (reauthorized in 2004).  The words in the dedication in the front of his book capture the impact of law and litigation as well as the role of the U.S. Congress and the U.S. Supreme Court.

On the day the United States Senate passed the Education of All Handicapped Children Act, Senator Robert Stafford of Vermont said:

“The thing that we do, then, is not only an act of law for equality in education, but an act of love for those extraordinary children wishing only to live ordinary lives.”  This book is dedicated to all the extraordinary children who let me be a part of their struggle for an ordinary life. (Martin, 1991)

One of the cases that captured my imagination was Irving Independent School District v. Tatro (468 U.S. 883 – 1984).  Amy Tatro was a three-year old child who had a condition called spina bifida, which is a congenital (she was born with it) disorder affecting the functioning of the  nerves in the lower part of her body; she needed braces to walk.  It also affected her ability to empty her bladder without the use of a catheter, a device that she could not use independently because she was so young.  Her parents wanted the school personnel to assist Amy so that she could attend public school.  The school did not think it was their responsibility because they considered catheterization a medical procedure.  However, the parents claimed that anyone can be easily trained to help Amy and would not require any specialized medical background. 

              After describing all the details of the case and all the years of appeals through the court system, Reed Martin describes Amy’s day in the highest court in the land:

When the time came for oral arguments, 9-year-old Amber and her family attended the proceedings in Washington.  Amber, who walks with the aid of leg braces, discovered that the Supreme Court was not readily accessible.  She was told she could enter from the rear and take a service elevator up to the level of the courtroom but she preferred to walk up the long steps in front.  When she arrived at the top, a newspaper photographer took her picture in front of the Court.  I am proud to have that picture hanging above my desk.

 

The Supreme Court found clearly that catheterization was a supportive service that fit under the definition of related services.  Such related services are intended to enable a child to benefit from special education, and it was clear that, without catheterization available during the school day, Amber could not attend school (Reed, 1991, p. 45).

              Reed Martin’s book helped me see the real people involved in these special education court cases—the plaintiffs, the family members, the defendants, the disability rights lawyers, the judges—and how the court system works.  His book helped me to pay attention to “case law,” that is, how laws are interpreted and set precedents for other children, youth, and adults with disabilities.

Reflection 1.2. When have you had to show courage?  What were the circumstances?  Was it courage of the heart or the mind/body or both?

Because the authors are showing courage, your respect for the authors is important to me.   Yet, that does not mean that we cannot analyze the stories using critical thinking.  According to Richard Paul and Linda Elder,

critical thinkers are clear as to the purpose at hand and the question at issue.  They question information, conclusions, and points of view.  They strive to be clear, accurate, precise, and relevant.  They seek to think beneath the surface, to be logical, and fair.  They apply these skills to their reading and writing as well as to their speaking and listening.  They apply them in history science, math, philosophy, and the arts; in professional and personal life.  (The Critical Thinking Community, ¶ 3)

While reading the Life Story Books, we also need to be aware of the “bias in the sampling,” i.e., these authors do not necessarily represent the experience of people who do not write books about their lives.  Many years ago Helen Featherstone (1980) clearly reminded us about the caution of reading memoirs when she wrote her own book, A Difference in the Family; Living with a Disabled Child.

The strengths and the weaknesses of these first-person accounts mirror those of the professional literature:  every book I have read has helped me to taste someone else’s pain and joy and to feel the textures of another life; none has compared one family’s experience with that of another, or fitted into a larger perspective.  The people who write these stories—the vast majority are parents—are atypical in certain ways: each one has managed to preserve some sort of margin in his or her life, for without private time no one can write anything longer than a shopping list; most have vanquished a good part of the misery that once threatened to engulf them.  We cannot generalize from these accounts to the larger population of parents of handicapped [sic] children.  But if we read with sympathy—and an occasional dash of skepticism—we can learn a great deal about the way certain human beings have felt in particular situations. (Featherstone, 1980, p. 8)

Another limitation of Life Story Books is that you as the reader should not generalize from one person’s story to another person’s story to a student that you meet in real life.  For example, within the spectrum of autistic disorders, Temple Grandin’s story Thinking in Pictures  (1995) is different from Dawn Prince-Hughes’ The Songs of the Gorilla Nation (2004) and Luke Jackson’s Freaks, Geeks , and Asperger’s Syndrome (2002).  As we read these stories, our minds naturally may look for patterns and overlap.  However, we must remember that even within one diagnostic category or type of life experience, there will be many differences.  Our goal is to find both the commonalities and the differences so that as we work with students and their families, we will be prepared for the individuality of each student walking through the classroom door.

What Does this Mean for the Classroom Teacher?

For the novice or experienced teacher, the first day of school encompasses a range of emotions, including anticipation, nervousness, excitement, and wonder. 

 “Who are the students who will be walking through the door to my classroom?  What stories will they be bringing in with them?  Maybe, a student who has been abused.  Another with a major illness.  Several students with learning differences and ADHD.  One returning from an alternative program for students with emotional disabilities.  A student who is brilliant and is bored in the classroom.  A youngster who challenges your authority.  A recent refugee from a war torn country.  A student with an ethnic/cultural background that is different from your own.  What about the families?  Who are they and how will you work with them?”  You may wonder if or how you can you begin to understand their experiences.  What if their experiences are different from your own and you cannot possibly understand what they might be feeling?  What if you find commonalities with your students’ experiences, which leads to an empathic response or perhaps you mistakenly assume that what worked for you may work for them? 

I hope that you use this guide as a map on your journey of professional growth.  We will examine the power of storytelling and its impact on your development as a teacher.  Fortunately, some of the authors of the Life Story Books shared with me some of their own ideas on what questions prospective teachers should ask while reading the Life Story Books and what they would like the reader to hold onto and make an enduring understanding.

Writing your own story will give you the opportunity to examine the multiple layers that intersect as your world has an impact upon you and you impact your world.  We will make connections between the Life Story Books and the professional literature and key educational theorists to further reinforce concepts that you can apply to your work as a teacher.  Remember to listen actively and openly to the stories of your students and their families.

Let’s get started!

Boston Children’s Hospital.  Children’s News Online:  Spring oasis at the heart of the hospital.  Retrieved January 20, 2005 from http://web1.tch.harvard.edu/chnews/ archive/03-29-02/garden.html

The Critical Thinking Community (2005, January 5).  About critical thinking.  Retrieved from http://www.criticalthinking.org

Cystic Fibrosis Foundation.  What is CF? Retrieved January 15, 2005 from http://www.cff.org/about_cf/what_is_cf/

Featherstone, H. (1980).  A difference in the family:  Living with a disabled child.  New York:  Penguin.

Grandin, T. (1995).  Thinking in pictures and other reports from my life with autism.  New York:  Vintage.

Jackson, L. (2002).  Freaks, geeks, and asperger syndrome:  A user guide to adolescence.  Philadelphia:  Jessica Kingsley.

Krakauer, J (1999).  Into Thin Air:  A Personal account of the Mt. Everest Disaster.  New York:  Anchor.

Martin, R. (1991).  Ordinary children, extraordinary lives:  Stories behind special education case law.  Champaign, ILL:  Research Press. 

Paul, R., & Elder, L.  (2001). The miniature guide to critical thinking:  Concepts & tools.  Dillon Beach, CA:  The Foundation for Critical Thinking.

Prince-Hughes, D.  (2004) Songs of the gorilla nation:   My journey through autism.  New York:  Harmony

Rainer, T. (1997).  Your life as story: Discovering the “new autobiography” and writing memoir as literature.  New York:  Penguin.

Rogers, A. (1993).  Voice, play, and a practice of ordinary courage in girl’s and women’s lives.  Harvard Educational Review, 63(3), 265-295. 

Rothenberg. L.  (2003). Breathing for a Living.  New York:  Hyperion.

Style, E. (1996).  Curriculum as a window and mirror.  Retrieved February 18, 2005 from Wellesley Centers for Women, The S.E.E.D. Project on Inclusive Curriculum (Seeking Education Equity & Diversity) Web site:  http://www.wcwonline.org/ seed/curriculum.html