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  • Mitch Blatt

Saying YES to Life: the Karen Gaffney Story

It’s a typical spring day in the Pacific Northwest, a light breeze, sun peeking through the clouds with a chance of rain. A crowd begins to gather at Keller Auditorium for TEDxPortland. The speakers are getting ready to take the stage for their big moment. They’re there with their families and friends, sitting down in the front rows so they can get backstage quickly.

As Karen Gaffney gets up to walk backstage, she looks behind her, and for a moment, she’s breathless—the auditorium is packed with people! She’s a bit nervous, but swallows it, walks backstage with pride, and gets ready to speak.

Karen has little to be anxious about. She received an honorary Doctor of Humane Letters degree from the University of Portland. She’s a distance swimmer who’s swam Lakes Tahoe and Champlain, the San Francisco Bay, and the English Channel. She’s an Administrative Assistant at the law firm of Stahancyk, Kent & Hook. She travels the world and has received prestigious awards for her advocacy work and public speaking.

You might also be surprised to learn that Karen was born with Down Syndrome. She certainly hasn't let it stop her from living life and achieving her dreams.

“Those of us with Down syndrome have a place in this world,” Karen declares boldly to the TEDx audience, “and ... can live and learn and grow just like everyone else.”

This is her stage and her moment to shine brightly to this decidedly young audience. The power of her words touches the crowd, inspiring them with a new perspective on disability.

Her time on the TEDx stage may be a defining moment, yet for this Portland icon, it’s far from the whole story.


Kicking and Pushing through Life


Born in 1977 in San Jose, California, Karen learned to swim at an early age, even before she learned to walk. Her dad, Jim Gaffney, gave her early encouragement. Gently blowing into her face until she held her breath, he would “gently dunk Karen in their warm backyard pool”1 to teach her breath control. He’d use the reward of going out to breakfast or trips to

Baskin-Robbins to motivate her to master each step: kicking, pushing with her arms, and so on. He expected Karen to be able to live her best life. But he didn’t realize all that her future would have in store, including TEDx.

She has loved swimming from an early age, and has taken part in many open-water relay and solo swims over the years—even holding the distinction of being “the only person with Down syndrome to have escaped from Alcatraz,” referring to a swim from Alcatraz to the San Francisco shoreline.

Swimming has given Karen an important platform to share her life’s passion and mission. Each swim would garner Karen more and more publicity. Her English Channel Relay swim, and the fact that she had earned a regular Associates of Science Degree, led to more talks... and then when she swam a nine-mile solo swim across Lake Tahoe, that created another burst of speaking engagements.


Karen began her public speaking journey during her junior year in high school at St. Mary’s Academy in Portland, as a keynote presenter at a National Down Syndrome Congress event. “And then,” Karen’s mom Barb says, “it grew from there. After high school, she went on to Portland Community College, and it took her four years to finish all the requirements for a two-year Associates of Science Degree. During this time she was doing a lot of public speaking, mainly just from people who had heard her speak at the National conferences.”

In her senior year of high school, students had to team up with community members of their choice for their senior projects. Karen chose to partner with PSU Professor Emeritus Dr. Jean Edwards; they created the video “Journey of a Lifetime, Beginning with the End in Mind,” but didn’t stop there. They went on to found the Karen Gaffney Foundation, a nonprofit organization devoted to highlighting the potential and capabilities of people with Down syndrome.

Karen’s been to various locales to speak on the inclusion of people with Down syndrome. As a matter of fact, INCIGHT's team reconnected with her at the 2023 Down Syndrome Network of Oregon Buddy Walk, where she was the Keynote speaker. Her various speaking engagements take her around the world—Walea Beach in Maui, Dun Laoghaire Harbor in Ireland, Vermont, New York, and more—and every cent of the honorariums she receives for them, grants, sales of her videos, and contributions from donors is put toward her Foundation.2


Karen has also presented on the stage at venues around the world—not just TEDxPortland—sharing her perspective on Down syndrome, sometimes with a humorous bent. Some of her favorite places she’s been to are Belize (where she and her mom got to see a one-eyed alligator), Trinidad and Tobago (where she spoke to numerous radio stations about Down syndrome); she took a plane from Trinidad to Tobago, but her mom jokes that she could have swam the distance, she’s that adept at swimming.

Karen’s traveled the world a lot, but when she’s at home in Portland, she works with the law firm. Her main duties there are to scan files to create digital copies, and to proofread beforehand so she’s not copying over typos or other such errors. She’s been working there for three years and had help from her job coach Nick Loftis at first; the firm initially gave her a variety of tasks to do, the goal being to have her be independent and do the work on her own. At one point, the head of the filing department said they needed help with scanning files to digital, and found someone to teach Karen how to do that (the specific procedure varies depending on what type of file has to be scanned)


“In each of my jobs,” Karen says, “I've had a job coach who’s helped me learn some other tasks. At the law firm, I had a job coach that worked with me for about 9 months to help me learn all the different processes to follow depending on the type of file that needs to be prepared and scanned. She put together a checklist and a procedure list for each type of file. Things like that.”


At her TEDx talk, the only accommodation she needed was to use a music stand for balance issues because of a hip surgery, and as a place to keep her speech notes, as she had trouble reading the teleprompter. She was full of humor, like “The doctor predicted that I would be lucky to be able to tie my own shoes, or write my own name. Well, he forgot to mention the part about the English Channel, though.” Using good humor and her public speaking skills, Karen works hard to share the message that “those of us with Down syndrome have a place in this world, and that we can live and learn and grow just like everyone else.”

Karen has received multiple awards in recognition of her work, such as an honorary doctorate degree from the University of Portland, and the Quincy Jones Exceptional Advocacy award from the Global Down syndrome Foundation. She says that “It is truly an honor to receive awards like that because it helps to shine a light on what Down syndrome really is today, and it also helps people see that those of us with Down syndrome have a place in this world and that we can live and learn and grow just like everyone else.” She received the Quincy Jones award at the “Be Yourself ” fashion show, a fundraiser event for the Global Down syndrome Foundation, in Denver, Colorado. Karen was one of many models with Down syndrome, escorted by Survivor host Jeff Probst.

Those aren’t the only examples of her positive influence. As prenatal testing advances and is able to detect Down syndrome earlier and earlier in pregnancy, some doctors are giving expecting mothers outdated information about what life would be like with Down syndrome—they might even advise terminating pregnancy. Seeing Karen living her life opened the mind of her fifth grade teacher in regards to the potential of a child with Down syndrome—when she found out that her unborn baby had Down syndrome, the teacher knew that it would be possible for them to thrive and live their life to the fullest. She decided not to listen to her doctor’s ideas about early termination, but rather to let Mia Rose be born.


A Fire for Adventure


So, that’s the story of athlete, public speaker and general all-around go-getter Karen Gaffney. She’s got one more chromosome than most of us, and she’s persevered in both swimming long distances like lake Tahoe and the English Channel and in fighting stigmas against people with Down syndrome. As she says in her TEDx talk, “I believe Down syndrome is a life worth saying yes to. It is a life worth saving.” She’s burning with a

fire for adventure, and saying yes to life every chance she gets.



 

When Karen was in school, she didn’t have any accommodations until fourth grade, whereupon she had a notetaker, a teacher’s aide, and a set of folders that she’d take with her between school and home, so that her mom could check in and make sure Karen knew what the assignment was. This folder system was so helpful that she’d copy her notes down so

that her classmates could take copies home. Here’s how Barb describes it:

“[A] teacher’s aide in the classroom ... helped with a really good communication system. We had a binder that would go back and forth with Karen every day. [It had] notes on what was going on in the classroom and [served to] clarify assignments so that I could check with what Karen said was the assignment and what the aide said. ... It was so helpful that ... [e]very day before Karen went home, she [the aide] took the time to make copies of her notes and put them there so other family members could come in and grab them if they needed them.”

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