15 March 2018, United Nations, New York City, USA
Good day.
My name is John Franklin Stephens. I am a man with Down Syndrome and my life is worth living.
When my body was first forming, when the first two cells were dividing, each of them had one extra chromosome. People like me tend to be a little shorter because our arms and legs are shorter. Our faces are a little bit flatter because our cheekbones and noses don’t stick out from our faces as much.
All that adds up to a person who is a little bit more uncommon .. in my case uncommonly handsome.
Don’t worry I am very accepting, very inclusive. I won’t think less of you just because I have more chromosomes than you do.
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.