With the 47th annual March for Life taking place Saturday in our nation’s capital, I’ve been grappling with the morality of abortion in the case of severe fetal disability.
Who am I to decide that someone’s life is not worth living?
Frank Stephens, actor, Special Olympian and advocate, gave a moving testimony to Congress in October 2017. He opened with a simple and powerful statement:
“I am a man with Down syndrome and my life is worth living.”
The chamber was totally silent as Stephens recounted the trials and joys of his life. He urged Congress to allocate federal money to Down syndrome research instead of complicitly agreeing with a culture of prenatal testing and selective abortion.
Stephens is a shining face for Down syndrome – high-functioning, successful, jovial. The severity of the physical and mental handicaps that accompany chromosomal disorders vary dramatically; not all people with Down syndrome are testifying before Congress.
Still, who am I to decide what gives a life value?
I read “Sixty-Five Roses: A Sister’s Memoir” over break. Heather Summerhayes Cariou and her sister Pam grew up in the shadow of Pam’s fatal genetic illness: cystic fibrosis. Pam ultimately succumbed to respiratory failure and died as a young woman, and Cariou recounted Pam’s suffering in unflinching detail.
One part of the memoir that really struck me was a serious car accident Pam was involved in. While recovering in the hospital, Pam had an epiphany: she could die just like anyone else – she could be killed in a car crash, hit by a bus, crushed by a falling piano.
This realization was paradoxically liberating for her – though CF was slowing and painfully taking its toll on her body, life was still unpredictable.
How could I ever know what’s in store for another?
Kate Carson wrote a wrenching column in USA Today about her decision to have an abortion during her 35th week of pregnancy.
Her baby, whom she named Laurel, was diagnosed with catastrophic and lethal brain malformations, including Dandy-Walker syndrome, very late in her pregnancy.
When Carson’s neurologist explained the laundry list of things Laurel would never do – like hold her head up, walk, swallow – Carson was dumbfounded.
“Do babies like mine just sleep all the time?”
The doctor hesitated before replying, “Babies like yours often aren’t comfortable enough to sleep.”
That was one of the most chilling statements I’ve ever read. What on earth is a loving parent supposed to do in a situation like that? An abortion at more than eight months pregnant is grisly; so is delivering an infant who will experience full-body seizures for the duration of its short life.
This column may seem like a jumbled collection of thoughts, because it is. But, there are connected questions pulsing through these stories and weaving them together – questions about the inevitability of suffering, the capacity for joy, the desire for compassion. And ultimately, questions about what makes life “worth it” and who has the right to decide.
ALEX STAUFF
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