Frank Stephens, an advocate for people with Down syndrome, delivered a powerful testimony on Capitol Hill this week about life with the condition.
Stephens, a Quincy Jones Advocate at the Global Down Syndrome Foundation, told the House Subcommittee on Labor, Health and Human Services, and Education Committee on Appropriations on Wednesday that “I am a man with Down syndrome and my life is worth living."
“Sadly, across the world, a notion is being sold that maybe we don’t need research concerning Down syndrome. Some people say prenatal screens will identify Down syndrome in the womb, and those pregnacies will just be terminated.”
Stephens pointed to a recent report that said nearly 100 percent of unborn babies with Down syndrome are aborted in Iceland, and cited high termination rates in Denmark and South Korea as well.
“It is hard for me to sit here and say those words,” Stephens said. “I completely understand that the people pushing this particular ‘final solution’ are saying that people like me should not exist."
Stephens said such a view is “deeply prejudiced” and indicative of “an outdated idea of life with Down syndrome.”
“Seriously, I have a great life,” Stephens continued, saying he has been a guest lecturer at major universities, contributed to a best‐selling book, and had roles in a film and television show, and spoken to thousands of kids about inclusion.
“I have been to the White House twice, and I didn’t have to jump the fence either time,” he quipped.
“I don’t feel I should have to justify my existence,” he added, but told those who "question the value of people with Down syndrome" said that “we are an unusually powerful source of happiness.”
"Surely happiness is worth something," he said.
He also argued that people with Down syndrome “are the canary in the eugenics coal mine.”
"We are giving the world a chance to think about the ethics of choosing which humans get a chance at life," he said. "Is there really no place for us in the world?"
Stephens argued that Congress should increase funds for medical research of Down syndrome, arguing that such research could also lead to discoveries about "cancer, Alzheimer’s, and immune system disorders."
“Help us make this difference,” he concluded. “Let’s be America, not Iceland or Denmark. Let’s pursue answers, not ‘final solutions.’ Let’s be America. Let’s make our goal to be Alzheimer’s free, not Down syndrome free.”
Watch Stephens’ opening remarks below:
