Karen Gaffney isn’t your average person — but it isn’t her diagnosis of Down syndrome that differentiates her. It’s her accomplishments.
As part of a relay team, Gaffney swam the English Channel, making her the first person with Down syndrome to do so. She swam nine miles across Lake Tahoe. She is the president of her own non-profit organization. She has received numerous awards and was an official Olympic torch relay torchbearer. All of this was made possible because her parents said no to institutionalizing her, instead doing all they could to give her an equal education to her peers.
Gaffney recently spoke in Ireland at the Save the 8th rally (a rally in favor of preserving Ireland’s 8th amendment protecting preborn children); prior to this, in 2015, she gave a Ted Talk about how life with Down syndrome is a life worth living.
“I wonder what comes to mind when you think of our tomorrows, the tomorrows of people with Down syndrome,” Gaffney asks the crowd. “Some of you may be thinking, ‘Is there a tomorrow for people like us?’ Given what is happening in a world of prenatal testing, anyone would question that.”
Prenatal testing for Down syndrome has advanced quickly in recent years, and a blood test can now determine if a preborn child has a risk of Down syndrome. Despite the inaccuracy of this noninvasive test, many people are so frightened of having children who may have different learning capabilities that they abort their children even without knowing with certainty that they have Down syndrome.
Gaffney shares the story of her fifth-grade teacher. It was the first year of teaching for her and she didn’t know anything about Down syndrome. The two grew close and are still in touch today. One day, that teacher called her to ask for Gaffney’s help.
“She needed my help because her baby would be born with Down syndrome,” explained Gaffney. “The diagnosis came very early in her pregnancy. She pushed back on any discussion of termination because she knew Down syndrome from a completely different perspective than her doctor did. She taught him about one of her fifth-grade students. Me.”
Gaffney notes that it’s only been about 50 years since doctors first discovered the reason for Down syndrome. Dr. Jerome Lejeune and his team discovered the extra chromosome and he went on to devote his life to improving the lives of those with the condition.
“It was never his intention to have his discoveries lead to the test that would prevent our lives,” said Gaffney.
Doctors who diagnosed Gaffney didn’t offer much hope for her life. At the time, people with Down syndrome were still being institutionalized after birth, but her parents refused.
“The doctor predicted that I would be lucky to be able to tie my own shoes, or write my own name,” said Gaffney, “Well, he forgot to mention the part about the English Channel though.”
Gaffney has such a list of accomplishments that many people who read her resume may be shocked to learn she has Down syndrome. She admits that if it weren’t for the families of those with Down syndrome who came before her, she may not be the person she is today.
“In the early 60s and 70s we had parents, ordinary parents, and other friends and supporters they could enlist, knocking down doors, pulling out all stops, standing up for our rights, and getting legislation passed that allowed people like me into the classrooms of the 80s and 90s,” she explained. “For many of those parents, the parents a generation ahead of mine, it was too late for their own children, but they made it happen for my generation. They opened the doors. They opened the doors and we walked right in. I guess you can say they created our tomorrows and we owe them a great deal of thanks.”
But now, despite all of this hard work and progress, while people with Down syndrome are graduating from high school, pursuing higher education and careers, others are still not being giving the opportunities that should be available to them. In addition, while people with Down syndrome have been proving their worth (which they shouldn’t have to prove), our society has decided to kill them before they even have the chance to be born.
Gaffney notes that despite the existence of numerous role models with Down syndrome who are golfers, dancers, models, musicians, artists, actors, and business owners who are “all doing our part to rewrite the story on Down syndrome,” the “race is on” to find faster ways to test for disabilities before birth. And when Down syndrome is predicted, doctors are pushing for those children to be aborted.
“The problem is, without timely and accurate information about all our progress, if a test shows an extra chromosome, pregnancies are being terminated,” Gaffney said. “Except for those like my fifth-grade teacher who say, ‘I know a different Down syndrome,” or ‘Wait a minute, let me learn more about this.’
Without the knowledge and understanding of the changes that have come for those with Down syndrome, frightened parents abort their children because doctors are giving them old information. Doctors are advising them to abort and parents aren’t always tracking down real life people with Down syndrome to learn about the advances and what life is like for them. They aren’t hearing what Gaffney has to say.
“I believe Down syndrome is a life worth saying yes to. It is a life worth saving,” said Gaffney. “[…] Every life has value. Every life matters regardless of the number of chromosomes we have.”
