Letter: Dispelling myths on Down Syndrome Day
By Sam Johnson and Robert Johnson
Today, March 21, is the official date for World Down Syndrome Day (WDSD), an event begun by the organization Down Syndrome International to help raise awareness of how people with Down syndrome play a vital role in our lives and communities.
In 2011, the United Nations General Assembly extended the recognition of this day by passing a resolution to observe WDSD on March 21 each year because this date (numerically 3-21) represents the three copies of chromosome 21 (trisomy 21), which is unique to people with DS.
On St. Paddy's Day, my younger brother, Robert, reminded me that WDSD was coming up. He said, "You should print out that article we did together and tell everyone to be 'Up With Downs!'" "OK," I said. "But what do you mean by 'Up With Downs?'"
"Well," he replied, "You know. It's better to be up than down, so everyone should be up with Down syndrome."
He added, "Maybe I should put it in the newspaper. I can write pretty good, you know."
"OK," I said.
So here's Robert's letter, in his own words:
Hi. My name is Robert Johnson.
I'm 46 years old. I moved to Grand Forks with my mom, brother Sam and sister-in-law Mary Ann in 2013 after living a long time in Devils Lake. I have family here in Grand Forks, like my brother Peter and his wife Marsha and my nephew Jake and nieces Carly and Zoe. I live in my own place now with good staff. I work at DHI (Development Homes Inc.), PS Doors, the Red River Valley Gymnastics Center, and have good staff at the Anne Carlsen Center who help me out a lot.
I am writing this article about DS awareness because I have DS myself and I know all about it. Here is what I want you to know about DS:
1. Having DS doesn't mean you are handicapped. People with DS can do lots of things.
2. People with DS are not retarded. I do not like this word because it is not "People First" language. People should not use the R-word "retarded" because it can hurt people.
3. DS is not a sickness, illness or disease. It is a condition that you are born with.
4. People with DS are able to learn lots of things if they have good teachers.
5. People with DS should not be treated different, but the same, only with special needs.
6. People with DS are people first and should be treated the same as all people—and that's with respect.
7. Finally, I want to say, don't look down on people with Down syndrome, look up—up with Downs!
Also I want to say how much I like living in Grand Forks and meeting new people all the time. I hope to meet you someday, too.
And now Sam will tell you some more things about World Down Syndrome Day.
On this day, parent organizations such as the National Down Syndrome Congress, the National Association for Down Syndrome, the ARC and B.U.D.S., distribute information and sponsor public presentations and activities like the Buddy Walk.
Here are some things these groups want you to know:
■ DS affects one in 691 newborns in the U.S., with an estimated six million people living with DS worldwide.
■ More than 400,000 people in the U.S. are living with DS.
■ DS knows no barriers of race, nationality, social class or religion.
Less than 35 years ago, many people with DS were routinely institutionalized. Thanks to the work and support of parents and advocacy groups, medical advances, early intervention and more, individuals with DS live healthy and fulfilling lives. These efforts are important to dispelling misconceptions about DS and key to realizing that we are all "more alike than different."
Sam Johnson, of Grand Forks, has been associated with the ARC Upper Valley, B.U.D.S and the LISTEN Center organizations. He is a past director of the ND Down Syndrome Interest Group and past editor of the national newsletter, "People with Special Needs." Robert Johnson, also of Grand Forks, has served on the ARC Board and is currently on the Consumers Board of Directors at DHI.