March 21 is World Down Syndrome Day. With less than two months to go until this day of awareness, it’s important to share the myriad stories of individuals living with Down syndrome (DS), and the powerful impact they have.
Approximately one year ago, John Franklin Stephens, an actor and activist, sat before the United Nations in Geneva, Switzerland, and gave a poignant speech about the dangers of eradicating infants prenatally diagnosed with Down syndrome (emphasis added):
I have been asked to tell you how to improve the lives of people with Down syndrome. The key is right there in my opening paragraph. It begins with “I am a man.” See me as a human being, not a birth defect, not a syndrome. I don’t need to be eradicated. I don’t need to be cured. I need to be loved, valued, educated and, sometimes, helped.
What should that help be? Provide training to parents and babies as soon as possible. Provide medical care, eye exams and glasses. Send us to school with everyone else. Provide job training and coaches until we learn to work on our own. Most of all, expect competence, not failure. By the way, the cost to the rest of you of providing that help is the cost of a single cup of coffee per month.
What difference will inclusion, acceptance, and early intervention mean? Allow me to use my life as one example of what’s possible. If it sounds like I’m bragging, it’s because I am. I went to school with my neighbors; I was included in ordinary classes. The common kids and I learned from each other. I learned to fight for the right to be treated like everyone else. I have been to the White House twice, and I didn’t have to jump the fence either time. I have had a lead role in a movie and a recurring role in an award-winning TV show, and my writings have been published all over the world. Last October, I spoke to the U.S. Senate. That testimony went viral. Over 160 million people have viewed it.
So, what is the point of all my bragging? Simply, that a life with Down syndrome can be as full and exciting as any other. My generation owes an awesome debt to organizations like the Lejeune Foundation and Special Olympics for freeing us from the prison of neglect.
I truly believe a world without people like me will be a poorer world, a colder world, a less happy world. To those who believe the world would be a better place without us, let me make three points.
First, we are a medical gift to society. Our extra chromosome makes us a blueprint for medical research in areas that include soft tissue cancer, heart disease, immune system disorders, and Alzheimer’s disease.
Second, we are an unusually powerful source of happiness. A Harvard-based study has discovered that people with Down syndrome, their parents, their siblings, and people close to them are all happier than society at large.
Finally, we are the canary in the eugenics coal mine. Genomic research is not going to stop at screening for Down syndrome. We have an opportunity right now to slow down and think about the ethics of deciding that certain humans do not get a chance at life.
So, I have been a good guest. I have made you smile, maybe even laugh. Now, before I go, let me be Frank. How would the world react if a nation proclaimed that it would use genomic testing to make itself “Unpopular Ethnic Minority Free by 2030?” The U.N. has all a name for this – but we need not go there. Instead, let us pledge together to welcome diversity. Let us decide from this day forward to include, not exclude; educate, not isolate; and celebrate, not terminate. Thank you.
Stephens’ testimony in Geneva, as well as before the United States Senate, is especially salient because multiple developed nations are coming close to eradicating the Down syndrome community using prenatal screening.
In Iceland, nearly 100% of infants prenatally diagnosed with Down syndrome are aborted.
According to a paper by Sarah Klucznik and Holly Slepian titled, “Iceland’s Abortion Policy concerning Children with Down Syndrome: An Ethical Analysis,” published in The Journal of Healthcare Ethics and Administration in July 2018:
[After the adoption of genetic screening in Iceland in the] early 2000s … approximately 85% of women chose to utilize the optional test to see the likelihood that their child may be born with genetic defects like Down syndrome, and almost every woman whose fetus was tested positive for Down syndrome has ended her pregnancy. As a result, only one or two children are born each year with Down Syndrome out of the country’s entire population.
In England, the DS abortion rate is almost as high. According to the National Down Syndrome Cytogenetic Register for England and Wales (NDSCR), in 2011, 2012, 2013, approximately 90% of infants prenatally diagnosed with DS in England and Wales were aborted.
In Denmark, the termination rate of infants prenatally diagnosed with DS is 98%, while in France, it’s 77%, according to CBS News.
Although the United States doesn’t have an official database of prenatal diagnoses and terminations, a 2012 paper titled, “Prenatal diagnosis of Down syndrome: a systematic review of termination rates,” looked at 24 studies from 1995 to 2011 in order to determine abortion rates for infants prenatally diagnosed with Down syndrome in the U.S.
According to the paper:
The weighted mean termination rate was 67% (range: 61%-93%) among seven population-based studies, 85% (range: 60%-90%) among nine hospital-based studies, and 50% (range: 0%-100%) among eight anomaly-based studies.
As Frank Stephens said: “We are the canary in the eugenics coal mine. Genomic research is not going to stop at screening for Down syndrome. We have an opportunity right now to slow down and think about the ethics of deciding that certain humans do not get a chance at life.”
Developed nations are legally terminating a type of person simply based on their perceived worth as a human being. Stephens is right — this will not stop at Down syndrome. The Overton window will continue to be moved unless conservatives stand up and stop it. We must loudly condemn this abhorrent practice, and pass legislation to protect those being marked for death.