As a young girl growing up in Aitkin, Kari Jo Johnson has memories of trying to protect her little brother, Zach, by staring down people at the grocery store check-out line who were staring at Zach because he has Down syndrome.
"I quickly realized while we were standing in line at the grocery store or anywhere in public, really, and people would stare, at the time, you're not sure what they're staring at," explained Johnson, who was 3 when her brother was born. "But I knew quickly they weren't staring at me, they were staring at my brother and it hurt. The more they would stare, the more I would intervene and get in their eye line and stare them down. Even at a young age, I would defend my brother."
And there was another incident on the school bus that stands out to Johnson. When she was in high school an older boy starting picking on Zach on the bus ride home, calling him "retarded."
Kari Jo Johnson, a 2006 Aitkin High School graduate, hugged her brother, Zach, in a family photo taken last Christmas. Johnson, 22, started a campaign at the University of St. Thomas this spring to get people to stop using the slang words "retard" and "retarded" in everyday speech. Johnson's 19-year-old brother, Zach, was born with Down syndrome.
"He doesn't really speak and when the boy started making fun of Zach and using the R-word and mocking him, the other kids would mock him as well," explained Johnson. "At that time there was no way I had the courage to really stand up for him - because it was so shocking - but I realized that if Zach can't defend himself, I need to be his voice, the voice that stands up for him."
Now 22 and a recent graduate of the University of St. Thomas, Johnson discovered a way to become the voice for her brother, now 19, and the many others born with intellectual disabilities in Minnesota.
A few months ago, Johnson started a grassroots campaign, based on a national effort, to "Spread the Word to End the Word" at St. Thomas, to get people to stop using slang terms like "retard" or "retard-ed" in everyday speech. These words are insulting and marginalize millions of people who have intellectual disabilities, along with their family and friends, according to the campaign's website, the r-word.org.
"Every time I hear the r-word used, it's like someone punched me in the gut, then got a knife and punched me again and twisted it," said Johnson. "It sticks with me because I know the word means more than just stupid or dumb. It's a condition, really, that relates to somebody. For me, that somebody is who I care about the most in the world."
Spread the Word
"The Spread the Word to End the Word" video, produced by former Aitkin High School graduate, Kari Jo Johnson, and fellow University of St. Thomas graduate, John Busch, can be found on youtube.com.
VIDEO: » 'Spread the Word to End the Word'
Johnson recruited fellow St. Thomas senior John Busch of Cottage Grove, whose little brother, Joey, also has Down syndrome, and they set up a table in the student union one day in March to get other college students to sign the pledge to not use the R-word.
Then they decided to take it a step further. Johnson, who majored in broadcast journalism and psychology, decided they should make a short video, using testimony from other St. Thomas students about why it is wrong to use the r-word. Busch's brother and Zach had starring roles in the four-minute video, which can be viewed on youtube.com. (Check out the Brainerd Dispatch online for the link.)
The students who appear in the video also volunteered to take turns with Johnson and Busch, sitting at a booth for a week in the union and passing out free awareness wristbands and stickers for those who took the pledge in early May. The group gathered nearly 1,300 pledges from St. Thomas students and faculty, about 25 percent of the campus population. They also hosted an on-campus event May 4 to premiere the video, which was attended by representatives from Special Olympics Minnesota.
"It reached further than we thought it would," said Johnson. Twin Cities media featured the group and video and the national "Spread the Word" organization also learned about it and featured it on its website. "It's kind of unbelievable that it's gotten so big. By (a week ago) Friday, everyone had their wristbands on. The kid next to me at the library computer had a 'Spread the Word' wristband on and I didn't know him. But we planted the seed in him. There is no way you can create social change with three people. But our goal was to plant a seed and it's something we know takes a lot of patience. It can be hard to confront somebody and say stop doing what you're doing but at the same time, it's the beauty of the campaign. It doesn't ask for time or money, it asks for you to stop saying something. Period."
Even though she's been very busy during her last semester in college - she led a group of students on a trip to Venezuela in January - Johnson felt compelled to this cause.
"I thought, this is what I just have to do," she explained. "I've learned the skills at St. Thomas to write and use video to portray emotion and people's stories. And God gave me Zach in my life and writing. Writing and Zach are two huge passions in my life."
Zach, 19, lives in Aitkin with their parents, Scott and Jodie Johnson, who own the Office Shop in Aitkin and Brainerd. He attends Aitkin High School in the mornings and goes to a work program in McGregor in the afternoon, which he loves, said his sister.
Zach wasn't diagnosed with Down syndrome until he was 6 months old, when he also was diagnosed with leukemia. He was a sick little boy for a long time but continues to be cancer-free.
"He's the biggest gift I could have ever received," Kari Jo Johnson said of her brother. "He is definitely a blessing in disguise. When he was growing up, at most times it was a challenge because he doesn't really speak and it made communication very, very difficult."
Johnson is continuing to live in the Twin Cities now that she has graduated and has a part-time job working for Radio Disney as part of its promotional street team. She also got an internship working in public relations for Special Olympics Minnesota for next fall.
Johnson said her brother enjoyed his role in her "Spread the Word" video. "I say all the time if he did not have Down syndrome he would be the star basketball player and the lead in the musical, even though he's a horrible singer. He loves to sing but he's terribly, terribly bad," said Johnson. "He would just have so many friends and he would just love his family. He's just a goofball. He pulls pranks on me all the time. He would be the absolute class clown."
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