"More Alike Than Different" Down Syndrome Awareness
by Sam Johnson
Combating stereotyping is a major goal of “World Down Syndrome Day.” According to United Nations Secretary-General, Ban Ki-moon:
"In working life, stereotypes against persons with Down syndrome often mean they are denied vocational training opportunities and their right to work. In the political and public sphere, persons with Down syndrome and other persons with intellectual disabilities are often deprived of their right to vote and fully participate in the democratic process."
“World Down Syndrome Day” takes place on March 21 because this date (3-21), represents the 3 copies of chromosome 21 (trisomy 21), which is unique to people with Down syndrome.
Each year at this time, people with Down syndrome, and those who live and work with them, make an effort to raise awareness of this genetic disorder, and remind the world that all of us are “More Alike Than Different.”
On St. Paddy's Day, my younger brother Robert reminded my that “World Down Syndrome Day” was coming up. He said: "you should print out that article we did and tell everyone to be 'Up With Downs!'"
Robert, who has Down syndrome, has a great sense of humor and likes wordplay.
It's an acquired skill, not always appreciated at times, but having grown up in a highly literate household with two English majors for brothers and twice as many teachers for siblings and siblings-in-law, he couldn't escape it -- the family has a propensity for puns, spoonerisms, malapropisms, Tom Swifties and various verbifications and witty word play.
"Okay," 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."
Then, in typical Robert Johnson "I-can-do-anything-you-can-do" fashion, he added, "you know, maybe I should put it in the newspaper. If I do say so myself, I can write pretty good, too."
"Okay," I said. "Why don't YOU remind people what you mean by "Up with Down syndrome" again and we can print it out.
So . . . here's Robert in his own words (with spelling help from me).
UP WITH DOWN SYNDROME
by Robert Johnson
Hi. My name is Robert Johnson.
I'm 44 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 good old Devils Lake, ND. I have lots of good friends there at Lake Region Corp. and in the town, and my sister Kari lives there, too.
But I have other family here in Grand Forks also, like my brother Peter and his wife Marsha and my nephew Jake and nieces Carly and Zoe.
I live in my own place now at the REM house on 10th St. S. with my housemates and good REM staff.
I work at DHI (Development Homes Inc.), the Blue Moose, and PS Doors, and have good staff at the Anne Carlson Center who help me out a lot.
I am writing this article about "Down Syndrome Awareness" because I have Down syndrome myself and I know all about it.
Here is what I want you to know about Down syndrome:
1). Having Down syndrome (DS) doesn't mean you are handicapped. People with DS can do lots of things.
2). People with Down syndrome 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). Down syndrome is not a sickness, illness, or disease. It is a condition that you are born with.
4). People with Down syndrome are able to learn lots of things if they have good teachers.
5). People with Down syndrome should not be treated different, but the same, only with special needs.
6). People with Down syndrome 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 some day, too!
And now my brother Sam will tell you some more things about "World Down Syndrome Day.
* * * * *
Yes, Down Syndrome International is one of several organizations sponsoring “World Down Syndrome Day,” dedicated to helping people know the facts about Down syndrome.
Parent organizations such as the National Down Syndrome Congress (NDSC), the National Association for Down Syndrome (NADS), “the ARC,” and "B.U.D.S." (Better Understanding Down Syndrome), along with hundreds of their affiliate organizations, sponsor public presentations, conduct special activities like “the Buddy Walk,” and distribute public service information and announcements (perhaps you’ve seen one of The ARC ads on TV with Robert at work picking up recyclables). Anyway, the goal is to showcase the many abilities and achievements of people with Down syndrome.
In each case, the goal is the same: to promote awareness that “We’re More Alike Than Different,” and that people with Down syndrome are capable people with many different abilities and interests.
Here are some things these groups want you to know:
• Down syndrome is a relatively common genetic disorder that affects one in 691 newborns in the U.S., with an estimated 6 million people living with Down syndrome world-wide.
• Down syndrome occurs when an individual is born with additional chromosomal material, usually three instead of two copies of chromosome 21 (trisomy-21).
• As a result of the extra genetic material, individuals with Down syndrome experience developmental difficulties that range from minimal to severe; however, the majority of cases fall within the mild to moderate range.
• Down syndrome knows no barriers of race, nationality, social class or religion. Over 400,000 people in the United States are living with Down syndrome, and the lives of many others are also touched by this genetic disorder.
It’s amazing to think that less than 35 years ago, many people with Down syndrome were routinely institutionalized.
Thanks to the work of parents and advocacy groups (like those mentioned above), medical advances, early intervention, classroom inclusion, increased opportunities, and loving support of families and communities, individuals with Down syndrome can and do live healthy, happy, and fulfilling lives.
Many individuals with Down syndrome graduate from high school and some attend college. Many are employed, and perform their jobs in an exemplary way.
As with so many things, education, familiarity, and awareness are important to dispelling the many misconceptions about Down syndrome, and key to realizing that we are all “More Alike Than Different.”