Congressional testimony that illuminates what a developmental disability means—and doesn’t mean
Last week, the actor, Special Olympian, and advocate 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 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 with the condition is killed. CBS News reports that “the United States has an estimated termination rate for Down syndrome 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, 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:
# # #
Mr. Chairman and members of the committee,
Testimony like this tends to circulate most widely in anti-abortion circles, but both opponents and advocates of abortion rights should be able to agree on its value for parents.
Parents who carry a fetus with Down syndrome to term, or who are conflicted about whether or not to do so, will almost certainly speak with a medical professional, and perhaps with a counselor or religious adviser. But they are unlikely to hear from an adult with Down syndrome—and perhaps unaware that many are loving their lives, bringing joy to others, and giving themselves to their communities. If those truths were more widely known, I suspect the odds of making it from conception to a long life with Down syndrome would be much higher.
https://www.theatlantic.com/politics/archive/2017/10/i-am-a-man-with-down-syndrome-and-my-life-is-worth-living/544325/
article by CONOR FRIEDERSDORF for The Atlantic | Oct 30, 2017
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 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 with the condition is killed. CBS News reports that “the United States has an estimated termination rate for Down syndrome 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, 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:
# # #
Mr. Chairman and members of the committee,
Just so there is no confusion let me say that I am not a research scientist. However, no one knows more about life with Down Syndrome than I do. Whatever you learn today, please remember this: 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 pregnancies will just be terminated.
It's hard for me to sit here and say those words.
I completely understand that the people pushing this particular “final solution” are saying that people like me should not exist. That view is deeply prejudice by an outdated idea of life with Down Syndrome.
Seriously, I have a great life!
I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn't have to jump the fence either time.
Seriously, I don't feel I should have to justify my existence, but to those who question the value of people with Down Syndrome, I would make three points.
First, we are a medical gift to society, a blueprint for medical research into cancer, Alzheimers, and immune system diroders. Second, we are an unusually powerful source of happiness: a Harvard-based study has discovered that people with Down Syndrome, as well as their parents and siblings, are happier than society at large. Surely happiness is worth something? Finally, we 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. So we are helping to defeat cancer and Alzheimers and we make the world a happier place. Is there really no place for us in the world?
Is there really no place for us in the NIH budget?
On a deeply personal note, I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimers. It's likely that this thief will one day steal my memories, my very life, from me. This is very hard for me to say, but it has already begun to steal my mom from me. Please, think about all those people you love the way I love my mom. Help us make this difference, if not for me and my mom then for you and the ones you love. Fund this research. Let's be America, not Iceland or Denmark. Let's pursue answers, not "final solutions." Let's make our goal to be Alzheimer's free, not Down Syndrome free. Thank you.
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 pregnancies will just be terminated.
It's hard for me to sit here and say those words.
I completely understand that the people pushing this particular “final solution” are saying that people like me should not exist. That view is deeply prejudice by an outdated idea of life with Down Syndrome.
Seriously, I have a great life!
I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn't have to jump the fence either time.
Seriously, I don't feel I should have to justify my existence, but to those who question the value of people with Down Syndrome, I would make three points.
First, we are a medical gift to society, a blueprint for medical research into cancer, Alzheimers, and immune system diroders. Second, we are an unusually powerful source of happiness: a Harvard-based study has discovered that people with Down Syndrome, as well as their parents and siblings, are happier than society at large. Surely happiness is worth something? Finally, we 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. So we are helping to defeat cancer and Alzheimers and we make the world a happier place. Is there really no place for us in the world?
Is there really no place for us in the NIH budget?
On a deeply personal note, I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimers. It's likely that this thief will one day steal my memories, my very life, from me. This is very hard for me to say, but it has already begun to steal my mom from me. Please, think about all those people you love the way I love my mom. Help us make this difference, if not for me and my mom then for you and the ones you love. Fund this research. Let's be America, not Iceland or Denmark. Let's pursue answers, not "final solutions." Let's make our goal to be Alzheimer's free, not Down Syndrome free. Thank you.
# # #
Testimony like this tends to circulate most widely in anti-abortion circles, but both opponents and advocates of abortion rights should be able to agree on its value for parents.
Parents who carry a fetus with Down syndrome to term, or who are conflicted about whether or not to do so, will almost certainly speak with a medical professional, and perhaps with a counselor or religious adviser. But they are unlikely to hear from an adult with Down syndrome—and perhaps unaware that many are loving their lives, bringing joy to others, and giving themselves to their communities. If those truths were more widely known, I suspect the odds of making it from conception to a long life with Down syndrome would be much higher.
https://www.theatlantic.com/politics/archive/2017/10/i-am-a-man-with-down-syndrome-and-my-life-is-worth-living/544325/
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