In the following essay, I explain how my experience as an included student with cerebral palsy influenced my identity as an individual with disabilities.  I also outline how my discovery of disability studies has influenced my role as a teacher, educator, and researcher in special education

Lance, G. Denise

English

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Reflections on Inclusion: Integrating the Disabled Self G. Denise Lance, Ph.D. Center on Developmental Disabilities, University of Kansas  Abstract: In the following essay, I explain how my experience as an included student with cerebral  palsy influenced my identity as an individual with disabilities.  I also outline how my discovery of  disability studies has influenced my role as a teacher, educator, and researcher in special education.    Key Words: disability, identity, inclusion    Since the age of two, I have been in some type of educational setting.  Like countless other parents  of children with cerebral palsy, doctors told my parents that I likely had severe mental retardation,  that I would never walk, talk, or write my name, and they should consider an institutional placement.   Thankfully, my parents rejected this negative approach.  However, they did believe that getting as  much therapy as possible was best, and the best place to receive therapy at that time was in a  preschool for children with disabilities.  Therefore, my first stop on the “road of knowledge” was a  preschool for “crippled” children.    Not Like “Them”    Most of the other preschoolers had mental retardation, and even at that young age, I recognized  that I was different from them.  Somehow, I also recognized the negative stigma attached to mental  retardation and did everything I could to distinguish myself from “those” kids.  With the speech and  physical impairments of cerebral palsy (CP), this was not an easy endeavor.     My preschool days were spent in hours of occupational, physical, and speech therapies,  all in an  effort to “fix” me,  or at least make me as normal as possible.   The therapists’ attempts to have me  put my tongue behind my teeth to make a perfect “t” sound or scoop food to my mouth without  spilling it sent the message that I was not acceptable as I was.  The more I could do things in a  typical fashion, I subliminally learned, the better my life would be.    Not “Handicapped”    In the summer of 1975, just months before the passage of PL.94-142 (a U.S. special education law  now known as the Individuals with Disabilities Education Act), my parents faced a critical decision.   I was too old for preschool, and they had to determine where I would continue my education.  The  most recommended placement for me was a school in the center of a large Midwestern city, an hour  bus ride each way from our home.  My mother approached the superintendent and asked him to  educate me within the district, asserting that she would go to jail before letting me go to the special  school.      My parents were not advocating that I be mainstreamed, as it was called then.  They simply wanted  me to have an education.  A district counselor visited our house several times that summer, assessing  me, and negotiating my placement.      My first public educational placement was a class for students with learning disabilities and mental  retardation, but I only stayed two days.  When my mother received a call from the counselor saying I  could not stay in that class, she was horrified, her mind racing to think what I had done to be  expelled so soon.  The problem was that I answered all the questions and would not let the other  students have a chance.      Not knowing what to do with me, they gave me a homebound teacher in the morning, and then I  joined a regular first-grade classroom in the afternoon.   I was fully included with a full-time aide  from second grade until I graduated from high school.      I owe a great deal to my parents for following their instincts and going against the grain.  I never  regretted being included.  Considering the accounts of other included students, I fared well socially.   I was very lucky because my peers were rarely cruel or made fun of me. Since I was included from  first grade, my peers just got used to me. But the great thing was that I wasn’t tolerated; I was truly  included. I had a best friend in every grade and was invited to birthday and slumber parties. When  we went to middle school, kids from other schools came together in one school. There were many  kids who did not know me and a few seemed unsure, but they got used to me just like the peers I had  known for five years.     I think my biggest struggle for acceptance was in Junior High, but that is when everyone feels left  out and does not know to which group he or she should belong. It was the mid-1980s and the key to  acceptance was designer clothes. So, Mom bought me a couple of pairs of Calvin Klein jeans and I  was “in.”     Despite the early messages that my disability made me less worthy, my parents encouraged me to  believe in myself and did not place limits on their expectations of me.  I knew from my preschool  experiences that others might not recognize my intelligence right away.  As a result, I often felt I had  to prove I belonged in public school by making good grades.    Although I am grateful to have been included, in retrospect, I realize that striving to be ”just like  everyone else” had some negative consequences.  My attempts to distance myself from children with  mental retardation left me with a cognitive ablest stance and prevented me from embracing my  identity as an individual with a disability.  In eighth grade, I recall proudly telling a newspaper  reporter who wrote an article about me that I “did not consider myself handicapped.”  I fought  efforts to connect me with other people with disabilities.  I did not interact with many other students  with disabilities in school, and I was the only included student with CP.  Therefore, when I met a  young man with CP in college, it took some time for me to feel at ease with him.    Not Able Enough    My first semester of college brought about a realization that my physical limitations threatened my  ability to achieve academically.  I had three courses that required a great deal of writing.  Typing  eight words per minute on a typewriter with a stylus, keeping up was tough.  I could not type as fast  as thoughts came, and there were not enough hours to do all  the typing.  At the end of the first  semester, physically and emotionally drained, I gave in.  For the first time in my life, I felt disabled!      Returning to the “panacea of rehabilitation,” I sought more therapy that would help me do more for  myself.  In other words, I wanted them to “fix me” so I could continue my life.      Six months of speech and occupational therapy did little to increase the stamina I needed for  academic work.  I learned to dress and feed myself, but for the price of time.  With the amount of  typing finishing college would require, time was not something I could expend haphazardly.  I  realized there was little point in spending three hours dressing myself if I was too tired to do  anything else the rest of the day.  I made a decision that it was better to have people help me, saving  my time and energy for academics and fun.    With nothing to make typing easier, I still decided to return to college.  Even if it came to taking  one class at a time, it was better than doing nothing at all.  I completed two more years of school  with the typing stick.  The summer before my junior year, my father purchased a computer for me,  not really knowing how I would access it.  When we brought the computer home I told Dad to put  the keyboard on the floor.  I had always used my feet to dial the phone and push buttons on my  stereo, so it was just a natural progression to type with my toes.  I also discovered the miracle of  abbreviation-expansion, software that allowed me to create abbreviations for the words I used most.        My life changed completely when I got the computer and assistive technology.  I increased my  typing speed from eight to 20 words per minute (still slow, but manageable).  Work did not take as  long, and I had more time for fun.  I completed my B. A. with a double major, English and  Psychology, in two more years, graduating with honors.      Toe-typing not only gave me a means to demonstrate academic ability, but it also became means  by which to celebrate my differences and begin to embrace and celebrate my identity as an  individual with disabilities.  I made greeting cards called “Toe-Typed cards by GDL,” complete with  a custom logo depicting feet on the keyboard.    Graduate School    At the end of my undergraduate career, I faced two possible areas for graduate study, English, my  true passion, or special education, which would fulfill my desire to use my experiences to help others  gain access to assistive technology and make their inclusion easier.      I believed that studying special education would be easier, in that the stigma of disability would be  easier to overcome.  Furthermore, I believed that my opportunities to teach English with a speech  impairment would be extremely limited.  I had never let others’ perceptions of my abilities stop me  before; I cannot explain why I allowed them to curb my ambitions this time.       As a graduate student in special education, I always felt  something was amiss, but I was not sure  what it was.  I assumed my disability would be more understood by my professors and fellow  scholars.  They, of all people, would see  my experiences could have an impact on the education of  children with disabilities.   I was an asset, not a threat.     Although I was never mistreated, I felt like an insider forced to look at special education as an  outsider.  I was trying to understand special education from the perspective of a person with cerebral  palsy and to integrate the content with my own experience as an included student.  When I attempted  to use my personal knowledge to illustrate points in class, I did not feel validated.  Many implied  that my education was an entirety unique event, never to be replicated again.  Someone implied that  my success was based on luck, fate, or Divine intervention, having nothing to do with ”best  practices.”  Of course, I realized not all students had the family support and exceptional teachers I  had, but I felt I still shared much with the current generation of students who have disabilities that  would be useful to improving current educational methods.      My area of expertise was assistive technology.  When I attended exhibits at conferences, vendors  always assumed I was looking for technology to help myself.  The concept I looked for ways to help  others was beyond their comprehension.     I was discouraged from taking a workshop in augmentative communication because I had physical  impairments requiring slight modifications to the computer (putting the keyboard on the floor).  The  organizers admitted afterward it would have been  no problem to accommodate me, but just the idea  I was not wanted made me hesitant about viewing them as trusted colleagues.    After reading Linton’s Claiming Disability (1998), I realized what special education lacked was a  disability studies perspective.  Linton points out that special education ignores subjective views of  disability, failing to see people with disabilities as having power over their own lives, or as important  to culture in general.  Next, Linton criticizes special education and related disciplines for  objectifying people with disabilities, ignoring how  personal accounts of individuals with disabilities  contribute to an overall body of knowledge,  favoring instead scientifically collected data.      Although my classes denounced the medical model and promoted student-centered approaches,  there was little talk of the social construction of disability or encouragement for students to celebrate  their differences.  In trying to make the education of students with disabilities as typical as possible,  the uniqueness of the disability experience and recognition of disability culture became lost.    Integrated Identity    My identity as a person with disabilities evolved as I progressed from preschool to public school to  college and to graduate school.  While my misdiagnosis and survival in public school forced me to  separate myself from my disability as much as possible, my college years required me to recognize  my disability, and my use of assistive technology gave me a means through which to celebrate it.  I  now consider myself a member of the culture of disability, along with people with cognitive and all  other disabilities.  I am a fellow soldier in the battle for accommodations, respect, and the freedom to  celebrate our differences.      Inclusion has come full-circle for me, progressing from the viewpoint of student to teacher.  I now  instruct general educators in ways of including students with disabilities, integrating my own  experiences into my online course.      As I delve further into the disability studies literature, I continually reconfigure my class to reflect  even broader perspectives of disability.  Together, I hope that my students and I can discover ways  to accommodate disabilities in a manner that honors students’ differences, supporting celebration  rather than compelling disdain.  Students should not have to wait until adulthood to learn disability  pride!     G. Denise Lance, Ph.D. is a Research Associate at the Beach Center on Disability at the University  of Kansas and Consumer Activities Coordinator for the Kansas University Center on Developmental  Disabilities.  She also teaches online for the University of San Diego.  Her research interests include  technology for individuals with disabilities, writers with disabilities, disability studies in special  education, and portrayals of developmental disabilities in literature.  References  Linton, S. (1998).  Claiming disability: Knowledge and identity.  New York: New York University  Press.  	  

Reflections on Inclusion: Integrating the Disabled Self

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Reflections on Inclusion: Integrating the Disabled Self

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