BEN HAS RAISED MICHELLE WELL 7/11/01
"Our lives revolve around you, Ben," was a recent comment Michelle made to her little brother. She said it with a
nervous chuckle as she kneeled down to be at eye level with Ben in his wheelchair, and leaned over to give him a hug.
I knew what she meant.
It had nothing to do with feeling disappointed at having a brother with disabilities, but with an anxiety Michelle and I
share in anticipation of Ben's surgery this week to repair his dislocated hip.
The imaginations of my daughter and I have run amuck. We have spent far too much time reflecting upon the worst
possible scenario for Ben while undergoing major surgery, being under anesthesia, or the recovery of his spirit while
almost completely restrained in a body cast for weeks and weeks. Because he is deaf and blind, Ben's primary means of
connecting to the world is through movement and touch, and that will be taken away.
Who would we be, and what would we do, if Ben or his spirit were no longer?
Our lives literally revolve around Ben and his welfare, happiness, future as an adult, and the worry that he could one
day become institutionalized - a worry that never escapes our thoughts completely, and has Michelle thinking of
becoming a politician.
Because, according to Michelle, "Too many politicians don't yet understand that Ben is important when they make
decisions about people's lives and I won't let anyone lock him away."
The bond Michelle has established with Ben that causes her to be so concerned, can only be described by giving
examples of their lives together.
Many times when Ben has quit breathing during a seizure in the middle of the night, Michelle has been known to stand
in her pajamas out in the street waiting for the ambulance to flag it down. Once she hopped on her bike to find the
ambulance when she could hear from the sound of the sirens that it was lost.
Michelle saved Ben from drowning last year, trained his dog to become a Therapy Dog, flashes a smile at anyone who
stares, and is my in-house critic and sometimes editor for this column before I submit it to the News Press.
Because of the circles we often travel as a result of our life with Ben, Michelle has made wonderful new friends.
However, in her life outside those circles she has lost a few friendships because they do not accept Ben.
Michelle has become enraged at the injustices in the world and how people with disabilities are treated, stared at,
abused, neglected and devalued by some parts of society, and spoke passionately in a class debate last year, about
the pros and cons of the legal system in some states that permit the execution of people with mental retardation.
She was one of four kids, out of thirty, that spoke against such executions.
Michelle is only fourteen years old, and envisions that a driver's license in a couple of years, will not only give her
freedom, but give Ben freedom as well. "I'll drive him to school, Mom. High School boys don't like their moms bringing
them to school."
While extremely bright and a straight "A" student, Michelle refuses to enroll in the gifted classes her school has to offer.
To her, it is comparable to kids with disabilities learning in separate classrooms away from the mainstream.
"Its segregation, Mom."
She is well on her way to rocking the status quo boat wherever she goes.
I am very proud of my daughter because she is a person of tremendous substance and convictions while in the body of
a teenager - a uniting that is fairly uncommon.
Could it be that that much credit for the fine human being Michelle has become belongs to Ben?
Of course, and while she doesn't always recognize it, Ben's life revolves around her because he worries about her just
as much.
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