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
"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,
"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
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
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
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
I see things from quite a different point
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
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 firstname.lastname@example.org.
Copyright 2002 by TheArcLink Incorporated
Permission granted by Terry Boisot and TheArcLink to republish.