Growing up in today’s world, I have found that people suffer from many different kinds of struggles.  Not everything is about gangs, drugs, the military, or violence.  With the value system of modern-day society, there is a different kind of struggle:  the emotional one.  For myself and other disabled teenagers, the battle to survive…to find a way in a society where acceptance is not a virtue…the battle to be an individual.

However, worst of all, these same children are forced to endure the stares and laughs of their peers. Like many other young people, I found myself locked in such a situation at the tender age of five when I was diagnosed with a rare illness called gastroenteritis with protein losing enteropathy.  I was too young to know the meaning of these words, but there was one issue that I did understand—the pain of it all.  

My parents tried to give me the best life possible, but they could not cure the inquisitive stares of my peers.  As I grew older, life became harder…I could not eat like everyone else, I could not play. People laughed, but I tried to be strong.  Some teachers complained because I was often out ill, complacent of the fact that I was a normal child just like the rest of their students.  No one understood me, and my mind became a jumble of juxtaposed thoughts.  I was stuck in my own
little world, alone, with no friends in sight.

As I grew older, I began to search for information about my illness.  The Internet became my place of refuge, a place where I was not forced to show my face and be subjected to a daily dose of teasing. I found a group that accepted me, run by a Massachusetts teenager suffering from osteosarcoma.  We shared our triumphs and tribulations, as the chat room was a place to just “get it all out.”  Stories of being stopped on the sidewalk by groups of older students who called out such names as “gimp” and “liar” became topics of everyday conversation.  The members of the group slowly grew stronger, laughing about the same incidents that had once brought them to tears.
With the help of support groups, disabled teenagers from around the world have learned that everyone deserves a chance to be known for their personalities as well as their physical appearance.  With the help of several other dedicated teens, I work with special education students, teaching them that it is okay to be different, okay to communicate with something other than words. Growing up in today’s world, I have learned that it is okay to be different, okay to be an individual.  A fighter, a survivor.  Me.

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 16, 2004