Proper use of language for Down Syndrome

PixieCurlPixieCurl Posts: 5,656Registered Users
I got this e-mail in a parenting group that I'm in, and thought it was worthwhile to post here.
To: NDSC Members and Affiliated Parent Groups

From: NDSC Center

Date: August 29, 2008

As it became apparent that John McCain would choose Sarah Palin as his vice presidential running mate, the NDSC and NDSS began working together to address the media and their language use in discussing Governor Palin's son with Down syndrome. Below is the release drafted and sent this morning. We'd like to encourage you to use this with your local media as well. We will continue to respond to the media as warranted as the campaign continues.

FOR IMMEDIATE RELEASE Contact: Sarah Schleider

212-763-4369/ [email protected] ndss.org

Governor Sarah Palin of Alaska has been selected as John McCain's choice for Vice Presidential nominee of the Republican Party. Governor Sarah Palin recently gave birth to her son who has Down syndrome. The Palins knew before their son's birth that he would have Down syndrome.

Below are tips for the proper use of language for 'Down syndrome'. The National Down Syndrome Society and the National Down Syndrome Congress encourages all media to use the below language:

· Down vs. Down's. NDSS and NDSC use 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 in the United States is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome" as well.

· 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." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."

· 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.

· It is clinically acceptable to say "mental retardation, " but you may want to use the more socially acceptable "cognitive disability" or "cognitive impairment."

Down Syndrome Myths and Truths

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely "retarded."
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as "retardation" ). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

For more information visit: www.ndss.org or www.ndsccenter. org
Faith, 3Aish redhead
Mama to two wild superheroes and a curly-headed baby boy :love5:

Comments

  • KurlyKaeKurlyKae Posts: 3,413Registered Users Curl Neophyte
    Thank you for sharing that info, Pixie. It is very informative.
    3a/2c
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  • cyndicyndi Posts: 3,341Registered Users
    Myth: Down syndrome is a rare genetic disorder.
    Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome
    .

    This is false. 1 in 150 children are now born with autism.
    I think that I deceive genius.:happy10:
  • CaliCali Posts: 475Registered Users
    I know a man who works at the local grocery store who has down syndrome. He is very kind. You can tell by his facial features he has down syndrome, and by the way his voice sounds, but other than that you certainly cannot tell he has down syndrome.

    He is not illiterate or unintelligent. A lot of people have come to the conclusion that people with down syndrome are just crazies, but this man is not. We have actually talked quite a few times, never about the subject of his condition, and he has 2 cats and a house quite far away from the grocery store. He takes the bus everyday to work and I consider him a friend.
    .png
    "Women are made to be loved, not understood."
  • geminigemini Posts: 3,325Registered Users
    cyndi wrote: »
    Myth: Down syndrome is a rare genetic disorder.
    Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome
    .

    This is false. 1 in 150 children are now born with autism.

    ??? I thought the consensus was that we still don't know if autism is strictly genetic or if external factors contribute to it.
  • cosmicflycosmicfly Posts: 1,814Registered Users
    cyndi wrote: »
    Myth: Down syndrome is a rare genetic disorder.
    Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome
    .

    This is false. 1 in 150 children are now born with autism.

    1 in 150 children are diagnosed with autism spectrum disorders. While it is believed that there is a genetic component to autism, at this point, it's not a genetic disorder with a clear marker the way Down syndrome is. I think (and I'm not double checking right this minute, just writing what I remember) that autism spectrum disorders may be the most common developmental disorder, while Down syndrome is the most common genetic syndrome.
  • badgercurlsbadgercurls Posts: 3,077Registered Users
    Thanks for posting this, Pixie. I did not know it was Down syndrome, not Down's syndrome. Good to know.
    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."

    This is a good thing to keep in mind with any sort of disability. People-first language is very empowering and separates the disorder from the person. So instead of calling "a disabled person," you might say "a person with a disability."

    I learned about people-first language a few years ago in a disability and communication class and try to use it as much as possible. I lapse sometimes, though, so this is a good reminder for me.
  • SarahMarieSarahMarie Posts: 901Registered Users
    When I was in high school, I went to church with a guy, Scott, with Down Syndrome. He had lots of friends, a girlfriend, and came to all of the youth functions. He was also hilarious! He loved to joke and laugh. I think it was Scott who changed my ideas about people with Down Syndrome. Thank you for posting this.
  • GretchenGretchen Administrator Posts: 10,831Administrators, Moderators Administrator
    Thank you for posting this, PC.

    Gretchen
    NaturallyCurly.com co-founder
    3A

    You are beautiful!
  • WileE-DeadWileE-Dead Banned Posts: 24,963Banned Users Curl Neophyte
    Thanks for posting this, Pixie. I did not know it was Down syndrome, not Down's syndrome. Good to know.
    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."

    This is a good thing to keep in mind with any sort of disability. People-first language is very empowering and separates the disorder from the person. So instead of calling "a disabled person," you might say "a person with a disability."

    I learned about people-first language a few years ago in a disability and communication class and try to use it as much as possible. I lapse sometimes, though, so this is a good reminder for me.
    Yeah, everyone wants to put the 's' on the ending of everything i.e., Alzheimer, Parkinson...just an example.
    I always think about the guy on Life Goes On who played Corky...what an amazing kid!
    Great post PC :)
    0004.gif

    Ever since the sports thread wars I have sensed a special connection between [edit] & Wile. Like the connection oil has to water. I almost can't speak of it. Wait....my eyes are misting. ~asq
    Let’s just stay together and tell the world to kiss our ass. ~P


  • Myradella3Myradella3 Posts: 2,481Registered Users
    Saying Down's, not Down, is how I caught a student plagarizing. Sadly for her, she choose to 'borrow' a paper from one of the worst students in the previous class. When I read it, I thought "this is a familiar kind of bad". "And she keeps writing Down's" even though we only talked about Down. So I called her in and asked her about how she chose the topic. She said it was because she had gone to school with a guy with Down (not Down's). I commented "I'm glad you're using the right term". At which point she said, "Oh you drilled it into us" (you know the student to teacher BS). She must not have even read through the paper she turned in. When I confonted her she cried saying she was tired and wanted to do a good job. The other student had told her that she got a good grade (with papers being electronically submitted, there's no marking up of papers). I'm a wimp so I gave her the opporunity to do another paper but worth only half the points.
  • WileE-DeadWileE-Dead Banned Posts: 24,963Banned Users Curl Neophyte
    Wow...that would have never happened to me...I've never even gotten a warning on a ticket...lol
    for the record, I've nevah cheated..
    
    :thumbdown:
    0004.gif

    Ever since the sports thread wars I have sensed a special connection between [edit] & Wile. Like the connection oil has to water. I almost can't speak of it. Wait....my eyes are misting. ~asq
    Let’s just stay together and tell the world to kiss our ass. ~P


  • MarMar Posts: 3,004Registered Users Curl Neophyte
    Thanks :)
    "what's so funny 'bout peace, love and understanding?"



    "If you judge people,you have no time to love them"
    -Mother Theresa
  • shellibeanshellibean Posts: 4,500Registered Users
    Very helpful! I will really try to remember to put the person part first from now on.
    A closed mind is a wonderful thing to lose.

    "...you could have a turd on your head and no one would notice."~Subbrock

    "I had an imaginary puppy, but my grandpa ate him."~Bailey

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