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 Òroad of knowledgeÓ was a 
preschool for ÒcrippledÓ children. 
 
Not Like ÒThemÓ

  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 ÒthoseÓ 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 ÒfixÓ me,  or at least make me as normal as possible.   The therapistsÕ attempts to have me 
put my tongue behind my teeth to make a perfect ÒtÓ 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 ÒHandicappedÓ

  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 wasnÕt 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 Òin.Ó 

  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 Ójust like 
everyone elseÓ 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 Òdid not consider myself handicapped.Ó  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 Òpanacea of rehabilitation,Ó I sought more therapy that would help me do more for 
myself.  In other words, I wanted them to Òfix meÓ 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 ÒToe-Typed cards by GDL,Ó 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 othersÕ 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 Óbest 
practices.Ó  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 LintonÕs 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 studentsÕ 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.