‘My Life is Worth Living’: A Man With Down Syndrome Testifies Before the HHS Subcommittee

By Nancy Flory Published on November 1, 2017

“Whatever you learn today, please remember this: I am a man with Down Syndrome and my life is worth living.” 

Actor and Down Syndrome advocate Frank Stephens testified before the House Subcommittee on Labor, Health and Human Services, and Education Committee on Appropriations last week. He passionately defended the value of life for preborn babies with Down Syndrome and sought more funding for research about Down Syndrome. 

“Sadly, across the world, a notion is being sold that maybe we don’t need research concerning Down Syndrome,” he said.

Some people say prenatal screens will identify Down Syndrome in the womb and those pregnancies will just be terminated. It’s hard for me to sit here and say those words. I completely understand that those people pushing this particular ‘final solution’ are saying that people like me should not exist.

He didn’t accept that. “I have a great life. I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show and spoke to thousands of young people about the value of inclusion in making America great. … I don’t feel I have to justify my existence.”

A Gift to Society

Stephens called those with Down Syndrome a “medical gift” to society, a blueprint into medical research into cancer, Alzheimer’s and immune system disorders. He added that people with Down Syndrome, their parents and siblings are “happier” than society at large. “We are giving the world a chance to think about the ethics of choosing which humans get a chance at life.”

Stephens asked, “Is there really no place for us in the world? Is there really no place for us in the NIH budget? … Please fund this research.” In referring to the almost Down Syndrome-free Iceland, he said, “Let’s be America, not Iceland or Denmark. Let’s pursue answers, not ‘final solutions.'”

A recent story outlined the Icelandic abortion tragedy. Since the early 2000s, “100 percent of women whose babies screen positive for Down Syndrome have had abortions,” reported The Stream


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