It’s unfortunate but it’s true, when we think about Down syndrome, more often than not we associate the genetic disorder with limitations instead of possibilities, with failure instead of success and with an attitude that it’s something we need to eliminate, rather than embrace.
But here’s an unpopular – but true – opinion for you: Down syndrome is not a birth defect, it does not limit your child’s potential. Children with Down syndrome can live a life just as exciting as anyone else – and without them, the world would be a poorer, colder, less happy place.
Actor, athlete, board member of the Special Olympics and advocate for Down syndrome, John Franklin Stephens, firmly believes this, as he spoke to the United Nations earlier this year telling them his story.
He began, “I am a man with Down syndrome and my life is worth living.
“When my body was first forming, when the first two cells divided, 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 uncommon.”
“In my case, uncommonly handsome,” he joked.
“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.
- Also read: What is Down syndrome?
"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.'"
Watch the speech here:
“I am a man,” he said. “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 by you, educated and, sometimes, helped. What should that help be?”
He explained, “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.
“What difference will inclusion, acceptance and early intervention mean?” he asked, before elaborating on his own well-lived life and experiences, saying it’s an example of all the possibilities and opportunities available to all:
“If it sounds like I’m bragging,” he joked, “it’s because I am.
“I went to school with my neighbours. 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?” he concluded, “Simply that a life with Down syndrome can be as full and exciting as any other.”
Do you have a child with Down syndrome? Tell us your story by emailing firstname.lastname@example.org and we may publish it on the site. Do let us know if you'd like to remain anonymous.
- 5 Celebrities with Down syndrome who are changing the world
- "50 moms, 50 kids, 1 extra chromosome": moms do carpool karaoke for World Down Syndrome Day
- Understanding birth defects