On March 15, John Franklin Stephens and Charlotte Fien, both of whom have Down syndrome, spoke before the United Nations in Geneva, Switzerland.
Both Stephens and Fien gave powerful testimonies in response to the practices in nations like Iceland, Finland, France, and the U.K., who abort staggeringly high percentages of infants prenatally diagnosed with Down syndrome.
Each of their testimonies feature moments that cut to the core, and those moments will be highlighted in bold below.
After cracking a few jokes, Stephens got into the meat of his speech:
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.
The following is Charlotte Fien’s testimony:
Good afternoon, my name is Charlotte Helene Fien. The future of Down syndrome is in grave danger. Around the world, more than 90% of babies found to have Down syndrome are aborted up to birth. A mother’s womb is the most dangerous place for a baby with Down syndrome to be. Governments and health ministers are keen to get rid of us.
Some countries like the Netherlands have put a price tag on our heads. They think the world will be better without people like me.
We have made so much progress in the past 60 years. We have gone from being left in hospitals after birth to being raised at home by families who love us. We have gone from being chucked into special schools to being in mainstream education. Some of us are even going on to University. So, why are we in such danger of being made extinct today? Because eugenics is becoming a thing to admire. A perfect baby, a perfect family, a perfect society are now possible – but are they really?
No, of course they aren’t. There is no such thing as perfection. You can try to kill off everyone with Down syndrome by using abortion, but you won’t be any closer to a perfect society. You will just be closer to a cruel, heartless one in my opinion. The only way to change society’s view of us is to be part of our community; to go to the same schools as other children; to not be hidden away like we were in the past.
We need to be employed; we need to receive training so we can work. As long as people with Down syndrome are kept out of mainstream society, we will be feared, not accepted, and aborted into extinction.
…unfortunately, achieving our goals, going to main stream schools, and working isn’t enough to stop countries from trying to eradicate Down syndrome. We need laws that protect us from eugenic abortions. Discrimination starts before birth and lasts our entire lives. We need laws like those passed in Ohio and other American states that ban abortions for Down syndrome.
Down syndrome has come a long way in the past 60 years. We have made so much progress. But we must not close our eyes to the genocide that Down syndrome faces today. We must not pretend it isn’t happening because that is when we truly will be in danger of having no future community.
The U.N. is against abortions that target female babies because it’s harmful toward women. So why are they okay with wiping out my future community? People like human rights “experts” [Yadh] Ben-Achour says women should be made or forced to abort if the baby has Down syndrome. How is that not eugenics? How is that acceptable to target a group of human beings for extinction? Is that not what genocide is? To get rid of an entire group of people?
If the U.N. is really serious about human rights, then they will start to act and condemn eugenics against my community. If the U.N. is to be taken seriously, then they will create sanctions against countries practicing eugenics. They need to start with Iceland, Denmark, Netherlands, and the U.K. They need to put an end to the genocide against people with Down syndrome.