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I Am a Man with Down Syndrome and My Life Is Worth Living

Frank Stephens

Frank Stephens

by CONOR FRIEDERSDORF [1]
The Atlantic [1]

Excerpts:

Last week, the actor, Special Olympian, and advocate [2] Frank Stephens gave this testimony to Congress: “I am a man with Down syndrome and my life is worth living.”

In fact, he went farther: “I have a great life!”

For those conceived with his developmental disability, it is the best and worst of times. “The life expectancy for someone born with Down syndrome has increased from twenty-five in the early 1980s to more than fifty today,” Caitrin Keiper writes [3] in The New Atlantis. “In many other ways as well, a child born with Down syndrome today has brighter prospects than at any other point in history. Early intervention therapies, more inclusive educational support, legal protections in the workplace, and programs for assisted independent living offer a full, active future in the community.”

But as she goes on to explain, “the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent.” In Iceland, nearly every fetus [4] with the condition is killed. CBS News reports [4] that

“the United States has an estimated termination rate for Down syndrome [5] of 67 percent (1995-2011); in France it’s 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity––and Down syndrome is included in this category.”

Many of those living with Down syndrome are understandably dismayed at the implication that their extra chromosome renders their life more trouble than it is worth.

That’s the context for Stephens’s full testimony [6], which urges allocating federal money to research that would help people with Down syndrome, rather than proceeding as though the best way to address it is prenatal testing and selective abortion.

Full Story at The Atlantic [1].