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 Inspirational Stories

Give Life a Chance

by Terry Boisot, TheArcLink <www.thearclink.org, November 25, 2002

Today I was reading an article about ethicist Dan W. Brock at the University of Rhode Island's tenth Honors Colloquium lecture November 19.


"Society might be better off if it prevents the birth of blind and severely disabled children."

 

Blindness and severe cognitive dysfunction are two disabilities Brock would prevent.

 

There aren't many people that know the story behind my own son's birth. It's just one of those things I've been silent on, and not one I have shared with Ben or his sister. In the words that follow, you will understand why.

 

Thirteen years ago, I was five months pregnant and my age (34) placed the baby in a higher risk category for having a disability. I was given a blood test in a pre-birth screening process and received a call from the doctor a few days later, explaining the results were "possible Down syndrome."

 

I had virtually no experience with disability. My experience was limited to being a passenger in the car as my mom drove from one end of town to the other passing Alpha School along the way. Alpha is where kids my
own age with disabilities were taught during the day. I wondered where their home was at night. I remember a street sign nearby that said, "Handicapped Peds."

 

"What is a Ped?" I asked my mom.

 

"People," she said.

Funny thing to call people.

For the past ten years, I have served on the board of directors of what is now known as the Alpha Resource Center. Full circle I have come.

 

The news given by the doctor didn't leave me feeling anxious, until the baby's father said, "We will have an abortion then. Life would be too hard for the baby."

 

His reaction is a reason I seldom share this story. I feel bad Ben's dad felt this way. It occurred to me at that moment his perspective on life was dramatically different than my own. It was a revealing moment for us
both.

 

Today, Ben's dad loves his son deeply, but the journey he is on is quite different than mine.

 

The results of the blood test prompted the doctor to order up an amniocentesis and ultrasound. It was fully paid for by the State of California, as would be the abortion if I so chose. I was given a consultation before the tests began, warning me of the rate of risk for a woman my age giving birth to a child with a disability and what that meant - preparing me for the truth I guess.

 

In retrospect, this process was about Ben as a long-term expense to the state versus a short-term expense of an abortion. This would be the first of many experiences over the years that would be a clear reflection of attitudes in the policies that guide the lives of people with disabilities and their families.

 

My life's work would become a challenge to those attitudes.

 

I was fully prepared to receive the word that my baby had a disability. I was even better prepared to express my thoughts if the doctor recommended an abortion and the baby's father insisted I get one.

 

But to the relief of some and to the surprise of us all, the results of the amniocentesis and ultrasound were "normal."

 

For those of you that know my writing, it is often a reflection of my spiritual nature. Even back then I knew the events during my pregnancy were purposeful.

 

Ben was born deaf-blind. His cognitive and physical disabilities would gradually reveal themselves.

 

According to Brock, "Preventing a severe disability is not for the sake of the child who will have it. Rather, it is for the sake of less suffering and loss of opportunity in the world."

 

I see things from quite a different point of view.

 

The opportunities in Ben's life are told in the thousands of words I've written in articles over the years. The opportunities he has given to others go far beyond that.

 

Ben presented me with the gift of writing. Until then, I didn't know I had a special talent.

 

If Ben had not lived, his friends would not know him, the school's culture would be different and something less than it is now. Our community would be less bright and less humane. His sister's view of the world that surrounds her might have been more narrow. I would not know the people I know today, and for that I am exceptionally grateful.

 

Lives are enriched because of Ben.

 

My good friend Jan said to me one day, about five years ago, "Ben's life teaches us things and brings to us opportunity."

 

Ben enjoys his life, loves his family and appreciates every day.

 

He wouldn't want to miss a single beat.

 

Ethically, morally and principally speaking, Dan W. Brock is wrong.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~

Terry Boisot is Ben's mom. She is President of the California Alliance for Inclusive Communities (CAIC), Director of the Leadership Project, serves on the board of directors of Alpha Resource Center of Santa
Barbara and The Arc of the United States, and is concerned about all disability matters. Terry welcomes comments. Please address them to her at tboisot@thearclink.org.

Copyright 2002 by TheArcLink Incorporated
Permission granted by Terry Boisot and TheArcLink to republish.

 

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