Karen Gaffney is obsessed with Broadway. It’s no surprise her favorite musical is “Wicked.” The curtain-dropping number is sung by Elphaba, the odd, avoided, green-skinned girl who sings, “I’m through with playing by the rules of someone else’s game. … It’s time to try defying gravity.”
Gaffney has been “defying gravity” since the womb — when doctors told her mother she would be born with Down syndrome.
Looking at her today, nearly 40 years later, it would be easy to miss her magnitude. Weighing 95 pounds and coming in under 5 feet, she limps with a cane. Her speech is slow and careful, her mild-mannered demeanor doesn’t strike you as typically heroic.
It only takes moments before you realize this is a flinty, boundless and mighty woman. There is a tireless powerhouse wielding that cane. A steadfast scholar in that head. And a prodigious capacity for love in that heart.
Gaffney is a stubborn exception for what passes as “conventional wisdom” about the limitations of Down syndrome. She is college-educated, a worldwide speaker and a fearless swimmer.
As she tells it, however, her most heroic feat — statistically speaking — may be simply battling her way out of the womb.
Since the widespread accessibility of prenatal testing, only 10 to 35 percent of babies diagnosed in the womb with Down syndrome actually make it into the world. More than two-thirds have their lives taken through abortion.
“Doctors are advising on data that reflects the past and ignores the present,” Gaffney told Angelus. “Here we are reversing the damage of life in institutions, removing barriers to education, making inroads into a full and inclusive life for people like me and we have those that say we shouldn’t even be born at all.”
Gaffney’s mother, Barbara, remembers being told a long list of “can’ts” and “won’ts” when Karen was born — she will never tie her shoe, won’t be able to write her name and more.
It’s safe to say, the experts were proven wrong. Way wrong.
Within hours of learning about Karen’s diagnosis, Barbara snapped into fierce, protective mother mode.
“The doctor was telling me how delayed she would be and she was just 24 hours old,” she recalled. “My thoughts were, ‘Okay, what is she not doing at 24 hours old that other babies are already doing, and how can we get her there?’ ”
Barbara started doing extensive research on her daughter’s condition and enrolled her in an early intervention program at just 3 months old near Sunnyvale, California, where they lived at the time. From there, Karen went to Catholic grade schools and high schools in Portland, taking all the same classes as her fellow students.
When high school came, the plan was to “take it a year at a time,” Barbara explained. Karen spent evenings and weekends working on homework, and clocking hours with teachers’ aides just to keep in step with her peers.
Karen loved tackling her studies, and in 1997 graduated from Portland’s prestigious Saint Mary’s Academy. But where she felt truly at home was in the water.
“She could swim before she could walk,” said her mother.
Gaffney’s father, Jim, started her in their backyard pool at 9 months old. What began as an exercise to improve poor muscle tone — something common in children with Down syndrome — soon became evenings of raisin-looking fingers and toes, and cajoling a splashing toddler to get out of the pool.
“The water was an equalizer,” Barbara said.
Out of the water, Gaffney was glaringly aware of her physical disadvantages and couldn’t help but feel inferior to other kids, a feeling reinforced by the cruel taunt of “retard” she heard from some classmates.
In the water, Gaffney was their equal, even their superior.
“Parents at the neighborhood pool would point to Karen to teach their kids, saying, ‘Look at Karen, see how she does it?’ ” Barbara reflected. “And she could hear that.”
Swimming wasn’t just a fad or something to make her feel better about herself. The little water baby in her father’s arms grew to be a serious athlete who consistently challenges and sets higher goals for herself. Blowing bubbles underwater became yards, which turned into pool lengths. Minutes were shaved off her race times. And her daydreams became bigger, much bigger.
Gaffney read a Smithsonian magazine article about open-water swimming in the English Channel and she knew what she wanted to do.
“We hoped the idea would go away,” Barbara laughed. But it didn’t.
Following a speech to the Santa Clara University women’s swim team, she met two women who had attempted unsuccessfully to swim solo across the Channel. Moved by Gaffney’s determination, they offered to help her train to swim the Channel in a relay.
Gaffney knew she had taken on a challenge that was difficult even for the best swimmers. The distance is 21 miles straight across, but swimmers usually swim about 35 miles due to the currents and tides, and it takes about 12 hours to swim across the Channel’s chilly, 60-degree waters, where the currents are always unpredictable and jellyfish are everywhere.
She trained for a little over 12 months and in 2001, with her mother praying Hail Marys from the shore, Gaffney became the first person with Down syndrome to swim the English Channel, part of a six-person relay team.
But it was not time just yet for Barbara to put her rosary away. Gaffney was just getting started. There were other waters to conquer.
By now her accomplishments are legend. There was the swim back and forth from Alcatraz in the Pacific. She has made that trip 16 times now. There was a five-hour swim in Hawaii. Nine miles across Lake Tahoe. Five miles in the Boston Harbor.
Karen says she likes to live an active life. Her daily routine includes swimming 2-3 miles before she heads off to her part-time job at Oregon Health Sciences University.
For all her achievements, she is proudest of her role as an advocate and role model.
Every civil rights movement has needed an activist with the gifts to break through the glass ceilings of society’s prejudice and misperception. For the Down syndrome community, Gaffney has emerged as a leader of rare poise and wit, whether she is swimming or standing in a corporate boardroom demanding greater inclusion for persons with Down syndrome.
Through her nonprofit, the Karen Gaffney Foundation, she champions “the journey to full inclusion for people with Down syndrome and other disabilities.”
With her religious upbringing, Gaffney recognizes that her life has a specific purpose and grandeur. Her favorite Scripture passage is from the ninth chapter of St. John’s:
“He saw a man who had been blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he should have been born blind?’ ‘Neither he nor his parents sinned,’ Jesus answered, ‘he was born blind so that the works of God might be revealed in him.’ ”
Gaffney hopes her story — what she has been able to accomplish through determination, her parents’ love and God’s grace — will continue to inspire others.
A few years back, at a fundraising walk for people with disabilities, Karen and her mother were stopped by a young married couple eager to meet her.
They shared their story of sitting exhausted in the delivery room of a Portland hospital, waiting for the doctor to bring in their firstborn child.
When the doctor did come, his expression was concerned. Cradling the child in one arm and a newspaper in the other, he explained that their baby had Down syndrome.
“We don’t know anything about Down syndrome,” the young mother responded. The doctor nodded. “I thought you might say that. That’s why I wanted to bring you this.”
Pulling the newspaper from under his arm he laid it on her lap. Peering up at her was the grinning triumphant face of a young woman and the headline, “English Channel Vanquished.”
It is a story worthy of Broadway, as Karen Gaffney continues to defy gravity and vanquish the obstacles that society sets before those with disabilities.
“In a high school religion class, we talked about that our life is a gift from God and what we do with our life is our gift back to God,” she said. “I have always remembered that. I hope I am giving back to God by standing up for Down syndrome and helping people see that it is a life worth living!”
OneLife LA 2018
Karen Gaffney will be among the headline speakers at the 4th annual OneLife LA hosted by Archbishop José H. Gomez and the Archdiocese of Los Angeles on Saturday, Jan. 20, 2018. The event will begin at La Placita/Olvera Street at 12 noon with a walk to the brand-new L.A. Historic Park for a family festival celebrating the beauty and dignity of every human life.
Joining Gaffney will be speakers sharing personal stories about overcoming homelessness and human trafficking, and one pastor from Texas whose congregation gave homes to all of their foster kids. For more information and to register for free, go to www.onelifela.org.
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