DOWN SYNDROME AWARENESS – First of a Two-Part Series to Increase Understanding and Respect
~by Lora Koch, The Scranton Journal
March 21, 2015, marks the 10th annual World Down Syndrome Day and people with Down syndrome, their families, friends, teachers, coworkers and supporters will be celebrating across the globe. Celebrated on the 21st day of the third month of the year (3-21), the date is symbolic of the third copy of the 21st chromosome that characterizes Down syndrome.
One such local celebration “Get Down 4 Down Syndrome” will be held at the Paton-Churdan school on March 20 at 9 am in the high school gym. For this challenge, p
One such local celebration “Get Down 4 Down Syndrome” will be held at the Paton-Churdan school this Friday, March 20, at 9 am in the school gym. For this challenge, participants nominate three people to dance for two minutes for one cause (3-2-1).
Emily Hansen, who founded the challenge in honor of her son Tyler, who has Down syndrome, explained, “Tyler and I would like to not only share our love for dancing, but create awareness for Down syndrome and ask others to not limit or judge others who are different than you. We’re all people and everyone deserves to be treated with dignity and respect. So have fun, get creative, and stop limiting others.”
The non-profit organization, National Down Syndrome Society (NDSS), represents more than 400,000 Americans who have Down syndrome and advocates for the value, acceptance, and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
According to NDSS, one in every 691 babies in the United States is born with Down syndrome, making it the most common chromosomal condition. A key part of accepting others is greater understanding. From the NDSS, here is an introduction to Down syndrome:
- Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
- There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about four percent, and mosaicism accounts for about one percent.
- Down syndrome occurs in people of all races and economic levels.
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
- A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
- People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
- All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
- Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
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The National Down Syndrome Society (NDSS) recommends this language when referring to Down syndrome:
- People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Down syndrome is a condition or a syndrome, not a disease. People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
- Down vs. Down’s – NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage is Down syndrome.
- While it is still clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability” or “cognitive disability.” NDSS strongly condemns the use of the word “retarded” in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.
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Panorama High School Hosts “Spread the Word to End the Word” Assembly
“Our campaign is about more than just raising the awareness of the R-word, it is also about changing attitudes of segregation and hate, to attitudes of acceptance and respect,” said student council member Lucas Gremler.
The annual day of awareness to eliminate the word “retarded” is held the first Wednesday of every March. The “Spread the Word to End the Word” campaign was started at Panorama several years ago by Buffy Louk, Paraeducator. Louk gave a moving speech about her daughter, Katelyn, who is developmentally disabled. “I was blessed with Katelyn as she has taught me more about life, compassion, and how to love unconditionally,” said Louk. “In actuality, there should only be one “R” word used in today’s society and that is RESPECT, and that is respect for everyone!”
The auditorium was filled with students, teachers, staff, and community members as they all learned about the importance of the language we use. “Respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities,” said Jensen Wilke, student council member. “However, much of society does not recognize the hurtful, dehumanizing, and exclusive effects of the R-word. Language affects attitudes. Attitudes impact actions.”
The student speaker for the program was Justin Rolfes, who inspired everyone with his story about his older sister, Megan, who has Down syndrome. His words were so meaningful, we have included the speech below, in its entirety.
In closing the assembly, student council member Christin Koch asked the audience, “What can we do to make this world a better place? Let’s start today by pledging to stop the use of the R-word and changing the R-word to RESPECT!”
SIDE BOX
For My Sister Megan, by Justin Rolfes – Sophomore, Panorama High School
Presented during “Spread the Word to End the Word” School Assembly, March 3, 2015
Last year my sister, Megan, who has Down syndrome graduated from here. Down syndrome is when you have a third copy of chromosome 21. Some people will sometimes come up to me and say “What’s the name of the disability your sister has?” and I say she has Down syndrome. One time after I said that, I thought maybe she doesn’t have a disability. She is always smiling and laughing.
I would not be able to smile 24/7, but my sister can. She shuts out everything that is bad in the world and focuses on the good things. I wish I could shut out everything that is bad in the world, but I can’t, but when I am around my sister she removes the bad from my mind and makes me laugh and smile.
It seems like everywhere we go she makes it ten times happier. When she walked across this stage last May, it was the happiest day of her life. She accomplished something every kid in this world wants, a high school diploma.
My sister is currently working in Adel with a company named REM. REM is a company that offers jobs to adults with a disability. REM has them create birthday cards, garbage bags, college and pro items, and a lot more. My sister loves her work, but the only part she doesn’t like is waking up at 6 o’clock every morning to catch the bus to work.
Kids with Down syndrome do not have minds like us. An adult with Down syndrome has a mind of a nine to 10 year old. Now think about that – a mind of a nine to 10 year old.
Why would you say the “R” word? You might not use it towards my sister or other kids or adults who have Down syndrome, but it is offensive. People who are slow or limited in mental development is the definition of the “R” word. Is it right to call somebody that? People believe it is alright to say it, but it is not. People believe that if no one hears the “R” word or they use it out of context that it is alright.
My sister might not know what an adjective is or how to divide or know what the Civil War was about, but she is a person. Just like every single one of us. She is human. Treat my sister and other people with respect.
I loved my sister ever since I can remember. I can remember when we were little we would be sitting on the swing set and she said, “Push me, Justin,” and I would say okay and I would try to push her but I couldn’t, I wasn’t strong enough. When I am sad, she laughs and makes me happy. She is one of the main reasons I wake up every morning and go to school.
I feel we need to do a better job here at Panorama High School of making people aware of the “R” word. I feel that other schools are not doing anything to solve the problem. I believe that there should be a day where every school in the world should talk about the use of the “R” word.
If kids like you and me would remove the “R” word from our vocabulary, the kids with a mental disorder or Down syndrome would have a better life. My sister has Down syndrome and I am a voice for her. People say the word because they think it does not affect anyone. To solve this problem, it is simple, not using the word.
If you want to help, please spread the word to end the word.
