Karen Gaffney

Addressing the Down Syndrome Information Alliance (DSIA) of Sacramento, CA, Karen Gaffney spoke eloquently of the power of advocacy for individuals with Down syndrome.  “Organizations like yours all over the country, are opening doors, opening minds, and opening hearts to enable us to live a better life in our community.”  For 20 minutes, speaking from memory with no notes or prompts, Gaffney described her own journey through life and urged the audience to help other individuals with disabilities push through the limitations and boundaries in their lives.
A young adult with Down syndrome, Gaffney is a gifted motivational speaker who travels extensively to promote advocacy for people with Down syndrome and other developmental disabilities.  She also speaks for anyone else who has ever had to overcome limitations in order to reach their goals.  Each public presentation is uniquely tailored to the theme of the meeting, and sparked by Karen’s passion and personal experience.
“When I’m writing my speeches, I try to understand what an organization is about,” said Gaffney.  “Once I know that, I can figure out how they’ve helped me and my family on our journey.”  So far, Gaffney’s journey has included a high school diploma, college degree, and a relay swim across the English Channel.

A Lifetime of Accomplishments

Gaffney earned a regular high school diploma from St. Mary’s Academy in Portland, OR in 1997, participating in the Science Club and lettering in swimming.  She went on to receive an A.S. Degree and a Teacher’s Aide Certificate from Portland Community College in 2001.  “It took me 4 years to get my college degree, but college was a lot easier compared to high school.  I was more accepted in college.  I had a hard time making friends in high school.”

On July 23, 2001, Gaffney became the first individual with Down syndrome to complete a relay swim across the English Channel.  “Swimming the English Channel was one of the most important challenges I ever accomplished in my life,” said Gaffney.  “I had a very supportive team, and we prepared for a year.  We had to get used to swimming in cold water.”
During the relay itself, the team mates alternated an hour of swimming at a time.  “We’d swim for an hour, then the next person would take over.  It took 14 hours for the entire swim, and I took 2 one-hour legs,” said Gaffney.  When it was her turn, Gaffney used the crawl, or freestyle, stroke to go the distance.

Today, Gaffney lives a busy life as the head of the Karen Gaffney Foundation and a teacher’s aide.  “I’m a teacher’s aide at an Early Head Start program for 3-year-olds,” Gaffney said.  "I work in two different classrooms, setting up the rooms and tables, doing the dishes, leaving snacks in the hallways, and taking the carts back to the kitchen.  I also do circle time, read to the kids, helping them with their words." The toddlers enjoy having Gaffney at the program.  “Sometimes the kids have a hard time listening, and sometimes they listen pretty well.  They’re 3-year-olds!” Gaffney explained.

In her role with the foundation, Gaffney has helped produce a number of videotapes for new parents of children with disabilities, teachers and school administrators, and the general public.  She’s also spearheaded a program known as “The Friends First Network ™,” which gives students with disabilities the opportunity to work collaboratively alongside their typically-developing peers on a service project to benefit their school or community.  In the process, misconceptions about disabilities go by the wayside and friendships grow.

In her workshops and talks on overcoming stereotypes, Gaffney is pragmatic about people who don’t know how to interact with her, or those who don’t understand what Down syndrome is.  “They just don’t know, so I talk with them and explain that we are people just like them.”  She also presents “Get Moving,” a program that provides participants with the tools they need to create a dynamic exercise plan and form a support structure that will help to keep people of all abilities excited and motivated about their fitness goals.

Public Speaking Skills

Although Gaffney is modest about her polished public presentations, she did talk about the learning process involved. “I learned my public speaking skills in high school.  I took several drama classes and two speech classes, and then continued to study those subjects in college,” said Gaffney.  “I practice monologues and dialogues, and it was the monologues that helped me the most.”

Today, Gaffney devotes up to 3 days of practice before public engagements. “When I’m preparing for one of my speeches today, I actually practice in front of a mirror.  To memorize my speech, I use a process called chunking that I learned in high school.  I learn one paragraph at a time,” said Gaffney.

Gaffney doesn’t remember the speech therapy she received as a child, but knows from her mother that it started about two years before first grade. “I do remember my mom telling me about Early Intervention.  For me, Early Intervention focused on gross motor and fine motor skills.  It was mostly hands-on and didn’t cover speech.”

Asked about her remarkably clear enunciation of even the most difficult words, Gaffney described the technique that her mother taught her. “I’ve had to stretch out the vowel sounds and stretch out the words.  I consciously stretch those sounds out so I can enunciate clearly.”
Gaffney uses humor to get her point across and to increase the comfort level of her audience.  She opened her speech in Sacramento by drawing attention to the support given by many of the organizations advocating for people with disabilities, “They all share a common vision of hope for a full and inclusive life for people like me…people like me who were born with something extra...and that something extra certainly wasn’t my height!”

A Message for Speech Professionals

When asked to share a message with speech language pathologists who work with individuals with Down syndrome, Gaffney said, “I’d like to ask them to work as hard as they can to help people like me learn to gain speech that can be understood.  I’d like them to have high expectations for us, and help us meet those expectations.  Speech is a very important piece in order for people like me to be included in the home, at school, in the community, in the work environment, and socially.”

Gaffney’s life is a testament to that inclusion, and she continues to establish programs to promote inclusion for other individuals with disabilities. “My goals are to see the foundation expand more, especially the Friends First club.  We want to see that thrive and expand to more high schools.  My non-profit organization is also putting together a drama camp that will help high school students, who are a part of Friends First, to communicate the courage it takes everyday to maneuver through teen hood. The one-day summer camp is called “Everyday Courage.”

Karen Gaffney can be contacted through the Karen Gaffney Foundation at www.karengaffneyfoundation.com or by email at kgaffney@teleport.com.

Sandy Keefe, MSN, RN is the healthcare manager at Camp Costanoan, a special needs camp for adults and children in Cupertino, CA.

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