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Steve S., Marblehead, MA

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   For 17 years I have lived with aform of cerebral palsy called spastic deplegia, and experienced all the joys andhardships that come with it. I have use of my legs but can only walk shortdistances without assistance. I use a walker in school, a wheelchair for longdistances and crutches when there's not room for a walker or wheelchair.

I've been very lucky to have supportive parents, friends and family andknow that compared with many in this world, I am actually privileged.

Iwas officially diagnosed with cerebral palsy at age two; I grew up with theunderstanding that I was, in every sense of the word, a normal child, though ifyou ask me there is no such thing.

My parents fought for me in every way,and for that I can never thank them enough. I don't know how they did it, buteven while raising five other children, my parents managed to make sure I goteverything I needed to succeed. They took me to physical and occupational therapyappointments and demanded that I be mainstreamed into a classroom with"normal" children, which was probably the hardest thing they did forme.

I won't lie, school has been hard. It's hard for everyone, but it'sextra hard for me. I deal with people every day who have no idea what cerebralpalsy is, let alone how to teach someone with it. I've had to be both teacher andstudent, constantly educating those who are supposed to be educating me. I haveto teach them to be flexible and understanding, not always an easy task. I don'trequire much, just a little extra time to do assignments, occupational andphysical therapy and a tutor to help me keep up. That doesn't seem like much toask, but I guess it is.

I've had quite a few teachers and administratorswho thought they knew better than me (or my parents) what was best for me.Because of them I have had to fight for everything. I have an I.E.P.(in-schooleducation plan), a legal document that spells out exactly what I need fromteachers and what the school is required to do for me. If you ask me, thatdocument isn't worth the paper it's printed on.

No matter what I do orsay, people just don't seem to get that all I want is the chance to do my best.People often pity me because of what I will never get to do, or what I have to gothrough. Yes, it's harder for me to do a simple task such as walking, but I don'tneed pity, or want it, either. I want understanding.

The only ones whoask about my challenge are little kids. I have often wondered why this is, and Ican only think it's because we are taught to be quiet and not embarrass people ormake them feel bad about themselves. All this attitude accomplishes is tocontinue the cycle of ignorance that plagues this world. I applaud those childrenand implore them to keep asking questions because that is the only way they willlearn, and break the cycle. To those who would be embarrassed by such questions,I ask, Why is it embarrassing? People beg for understanding; how can someoneunderstand unless given the chance to ask questions? A disability, as the worldcalls it, is nothing to be ashamed of. It is a privilege, a new way of looking atlife. Think of it that way and nothing can bother you toomuch.BR>





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