Last week, I sat down with the man who is changing how millions of people across the world see Down syndrome.
Frank Stephens grew up in a world that questioned his value and worth. In the US, 67% of pregnancies prenatally diagnosed with his condition end in termination. The rate is even higher in most European countries. Where this is happening, Frank is fighting to build a more inclusive and loving world for people with Down syndrome.
Last week, shortly after World Down Syndrome Day, I had an opportunity to go deep with Frank on everything from pop culture to Dr. Richard Dawkins to life with Down syndrome. We released a video that’s going viral on social media right now. Here’s the extended interview.
So Frank, you know pop culture pretty well. I want to start by asking you this question. What’s your favorite song?
Definitely, “Don’t be cruel.” There are some people who want to be cruel to people like me because they have no idea of what we bring to the table. They think that we live a life of unhappiness and suffering. But the thing is, that’s not really true.
You’ve done some pretty extraordinary things in your life. What accomplishments are you most proud of?
Frank Stephens giving a speech in front of a US Congressional Committee. Watch here.
I’ve had an amazing life. I was named alongside Malala Yousafzai as part of The World’s Most Extraordinary Ordinary People. I starred in a film called, Touched by Grace. It was the most amazing film, and I loved every minute of it. I’m getting ready to do a Broadway play.
It makes me happy knowing that I’ve accomplished a lot. People like me can accomplish amazing things too.
I’ve been to Geneva, Paris, London, Italy, and Australia. I’ve had the chance to testify at Congress. I’ve traveled over 70,000 miles, and those 70,000 miles made all the difference. I think people like me should travel because they need to find their way to to cultivate their own legacies. You should have your own experiences. You don’t know what life can be like if you can just open up your mind and heart a little.
I love the fact that I can do all these amazing things with people like you. It makes me happy knowing that I’ve accomplished a lot. People like me can accomplish amazing things too.
I want to ask you a few of the most Googled questions about Down syndrome on the Internet. Let’s start with this one: “Does Down syndrome have a cure?”
I don’t believe that we do have a cure, but it would be nice if we did have one. But the thing is Down syndrome is part of what makes us who we are. It gives us a chance to understand and look at life in different ways.
Down syndrome is part of what makes us who we are. It gives us a chance to understand and look at life in different ways.
Here’s another often Googled question: “Why do people with Down syndrome look different?”
Sometimes people don’t see us the way the way they should. We look different because sometimes our arms and legs are shorter than most people’s. Our faces are usually a bit flatter than most people’s because our cheek bones and noses don’t stick out from our faces as much. All this adds up to a person who is a little bit uncommon. In my case, uncommonly handsome.
Frank, you often cite this quote by Dr. Richard Dawkins: “It would be immoral to bring a Down syndrome child into the world.” What would you say to him?
Dawkins believes that we bring more suffering than happiness. But I think that’s just no true. Take a look at the stuff that I’ve accomplished. Other people can accomplish amazing things too. If he could only see what’s in our heads, our eyes, and learn that we can bring more happiness to this world. Dr. Richard Dawkins, do me a favor and get a different view. See that we live amazing lives.
So, tell me. How do people with Down syndrome enrich our world?
Well, first, we are a medical gift to society. There is a blueprint within people with Down syndrome to help cure many diseases. Second, we are an unusually powerful source of happiness. Out of all the people in this world, we are happier than society at large. Because of that, parents have a happier child and a happier life. And finally, we are the canary in the eugenics coal mine. Research is not going to stop at screening for Down syndrome.
What do you think the medical community gets wrong about the Down syndrome diagnosis?
Doctors often tell people, “Oh, your child will be a burden to our family. Your child will bring misfortune to you.” They bring an outdated and inaccurate picture of life for people like me. When the genetic testing comes back positive, they think they can take prenatal testing and abortion to the next level. But I believe that’s just wrong. We can be better doctors and tell parents, “Congratulations, you’re about to have a baby with Down syndrome!” That’s how they should put it with the word “congratulations!”
We can be better doctors and tell parents, “Congratulations, you’re about to have a baby with Down syndrome!”
How does it make you feel when you hear that doctors are saying things like that?
It makes me feel a bit mad. I want them to understand that doctors should not have that feeling. If they’re going to treat people with Down syndrome different from people without, they need to tell parents what an amazing child they’re about to have. But sometimes doctors don’t see it that way.
Sometimes Doctors recommend abortion to parents who receive a Down syndrome diagnosis. Why is this recommendation misguided?
That’s like telling a patient that their leg is being treated for gangrene, and they give you the preferred option to amputate. We live in a community sometimes filled with fear. We need to overcome that fear and be led out of the darkness and into the light. I believe we can do that right here, right now. Abortion is not so much a failure of law as it is a failure of love.
Abortion is not so much a failure of law as it is a failure of love.
What’s the biggest problem you’re trying to solve with your work?
I want to fix the fact that sometimes people don’t always look at us with love. Love can be the answer to everything because when you love, it gives you a radiant light that shows people you love people. You want to be able to show people that we are happier than society at large. We love all of you.
Love can conquer everything. Share the love with everyone around you because love is what makes us whole inside.
What would you say to a parent who’s just received the DS diagnosis? How might you deliver the diagnosis?
I know it’s gonna be hard. But we can actually bring joy to your life, if you give birth to us. People who live in fear of bringing someone like me to life don’t think that. You’re going to feel as happy as a parent can be. A Harvard Based Study says that parents of kids with Down syndrome can be happier than society at large. When you have a child like me, we can bring joy and happiness to your life. Please think about giving us life because you won’t know how much joy we can bring unless you bring us into this world.
Think about all the amazing things that your child can accomplish. Think about their futures, their dreams. Think of being full of love. Your parents, your other children, your uncles and cousins will love your child. Think about all the people that will be around them to give them love too.
Let us fill your life with love, happiness, and joy. Because that’s what we bring.
Let’s think for a moment about what joy we can bring to your whole life when you have someone like me in it. I have friends who have a child like me, and they’re happy. My good friend, Brad, lives in Arkansas and has a baby like me. He is as happy as a man can be. And yes, they found it hard at first, but they grew more and more in love with their child from the moment he was born. So, let us fill your life with love, happiness, and joy. Because that’s what we bring.
John Franklin Stephens is an American disability advocate, actor, and Special Olympics athlete who happens to have an extra chromosome. Follow along on his journey on Facebook.
Josiah Friedman is the Founder and CEO of Voices for the Voiceless, the movement to create a world where every human being is valued and no one faces unplanned pregnancy alone. Watch his TEDx talk here and follow him on Twitter.
Chris Calacci—Dad to Emmy Joy—shares his story and discusses how to transform the cultural perception of Down syndrome.
Special needs mom Charity Dotson proves every person is worthy, no matter their disability.
My interview with Madeline Stuart