Nicole Sullivan cringes every time she hears the R-word as in “you’re so retarded” and “that’s so retarded.”
The 17-year-old takes the affront personally.
Nicole, who will be a junior at Pierce High School, said that when she hears the R-word, she thinks of her older sister, Ashley — the sister she never met.
Ashley Lohr Kuether, who was born full term in February 1994, lived only 13 hours.
“The doctors told my parents they had to take her to Omaha by Life Flight because of the condition she was in,” Nicole said. “It was a lack of oxygen to her system that probably caused all of her medical problems.
“Had she lived, the doctors told my parents that she would have been a vegetable or mentally retarded. Those were the terms used then by the medical community.”
Nicole, who was born in April 1995, was given Ashley as her middle name in honor of her sister. She cherishes a photo of Ashley, which she incorporated into a project she completed for a Family, Career and Community Leaders of America (FCCLA) advocacy project this past school year.
Nicole, who topped district and state with her project that advocates ending the use of the R-word, will present it to judges at the national FCCLA conference in Orlando on July 11.
Nicole said she decided to focus on the R-word for her project because “I want my sister’s voice and the voice of every family who has members with a disability to be heard and accepted. My concerns are to show people how hurtful the R-word truly is. It is disrespectful to call people with intellectual disabilities retarded.”
While Nicole said she “never got to meet her (Ashley), I know she would have been a great person with or without a disability. So anytime I hear someone say, ‘That’s so retarded,’ I think about my sister or any other individual who has to fight a disability daily.”
Nicole, who is the daughter of Pat Sullivan of Norfolk and Lorie Sullivan of Pierce, said the focus audience for her campaign are elementary students and teens who may use the R-word as a slang word to degrade or insult people.
From research, Nicole said she learned that one in four U.S. teens use the word “retarded” incorrectly at least once a day. This means 25 percent of the U.S. teens do not know what the word retard really means, she said.
When the word was originally introduced, Sullivan said the term “mentally retarded” was a medical term with a specific clinical meaning.
Currently, Nicole said there are 7.5 million individuals in the U.S. who have intellectual disabilities, including Down syndrome and low- to high-functioning autism. One in 10 U.S. families will be directly affected by a person with intellectual disabilities at some point in their lifetime.
“Ever since I was little, I was told that the R-word one of the worse curse words you could say,” Nicole said. But she never understood why until she was older and her parents told her about Ashley.
“Ever since I found out, I’ve been so proud of my sister,” Nicole said. “I tell everyone about my sister and the ones who didn’t know learn about her in my project.”
Cheryl Timm, FCCLA adviser at Pierce, said Nicole’s project “has been near and dear to her heart. She becomes passionate about what she’s involved in. She goes above and beyond to do all that she can the best that she can.
“I admire her very much. As a teenager, she’s willing to stand up and be a voice for those who can’t or won’t. She’s built a bridge of understanding, that we’re all created equal.”
For her advocacy project, Nicole was involved in a number of activities including: making signs and fliers to hang in her school and community; giving a presentation at the Zion Elementary School in Pierce to students and teachers; creating a Facebook group called “The New R-word . . . Respect”; designing an educational display board; cutting public service announcements; assisting with Special Olympics events and writing letters to the editor.
Through her research, Nicole discovered the Special Olympics’ “Spread the Word End the Word” campaign and adopted it as part of her project. To date, more than 300 people have pledged to stop saying the R-word through Nicole’s efforts. It’s a campaign she plans to continue.
For the past several months, Nicole has been a volunteer at Northstar Services in Norfolk where her father has been employed for more than 25 years. Northstar provides support to adults with intellectual disabilities.
Nicole said, “I play games and talk with the individuals and interact with them like they’re any other person because they are.”
At this point, she plans major in American sign language and special education in college.
Nicole said she also plans to “keep advocating for others with disabilities because I’ve been in their shoes. I’ve been bullied, ridiculed and insulted. I’ve encountered it. I have dyslexia.”
She remembers being pulled from class as a second-grader to take special education classes in another room and when she had different assignments than her classmates.
“They’d laugh and snicker at me because I wouldn’t be able to read something as well as them or I’d mess up on a word,” Nicole said. “I still struggle with it, but I have a very mild dyslexia.”
But, she said, “My disability does not define me. I define my disability.”