Archive for August, 2008

Proper Language

August 29, 2008

Sent from National Down Syndrome Society and National Down Syndrome Congress

FOR IMMEDIATE RELEASE
Contact: Sarah Schleider
212-763-4369/ 917 921 9889 (cell)
sschleider@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.

Make A Wish Foundation

August 27, 2008

Last night I was invited to a Make A Wish party! What an amazing place. It is beautiful inside. When you go a party they explain how Make A Wish got started. It was all very interesting to me. They have a board with the names of individuals wanting their wishes to come true. I knew of few of them through the UDSF and also because of Lily’s schooling.
Anyway, there is one little girl whose wish came true and because of her and her families strength, courage, and conviction to keep moving forward they have created a wonderful new store called So Cupcake I love this place; the Banana Cream Pie cupcake has filling in the middle and graham cracker crust on the top!
So, if you are ever by 3939 S. Highland Drive in Salt Lake stop by. It’s one of the good places to go!

UDSF LAGOON DAY!

August 19, 2008

I had a great day yesterday! I spent most of the day with Dawn, Kristen, Von, Danielle, Dustin, Henry, Brynn and of course Lily! We went to UDSF Lagoon Day!!

With only a few minor glitches to start off the day things turned out great. The first glitch really happened to Kathie and turned out great for me. Her hubby’s car broke down in Provo, while she was already at Lagoon! So, I had the pleasure of taking all her guests around the park with me. I started off with Lily, Dawn, Henry and Brynn. After meeting Kathie we added Kristen, Danielle and Von to the group. We went to the log flume first. We didn’t get wet enough so we went to Rattle Snake Rapids! We were wet and hungry after that! While eating we got a call from Dustin and his Aunt Connie, and our group for the day was formed.

We had our annual get together at the terrace. Oh yeah, that was the second glitch. Lagoon moved our meeting place! We have been meeting at the Maple Terrace for years, but for some reason they moved us this year. With a little wandering our families were able to meet up, enjoy each others company and watch our beautiful kids perform at the talent show. They were all great! We even had a celebrity there. Brett Banford came just to perform for us! He took time out of his day, which by the way was his birthday! HAPPY BIRTHDAY AGAIN BRETT!

Brett also told us what he had been up too. It was all good stuff. He was flown out to New York to film a commerical about respect and acceptance. It was all due to the Tropic Thunder movie. Thank you Brett for advocating for all of us!

Check out all the Lagoon pictures at UDSF photos – Photobucket

If you want to share your pictures send them to suzie@udsf.org

RESPECT!

August 14, 2008

Thank you to the Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions for allowing us to download this great ad!

OPEN LETTER TO BEN STILLER AND DREAM WORKS STUDIO

August 12, 2008

August 12, 2008

An open letter to Ben Stiller and DreamWorks Studio

Dear Mr. Stiller and DreamWorks Studio,

I just came from viewing “Tropic Thunder” I swore, even blogged to the world, that I would not see this movie, but after talking with people who knew I was considering protesting the movie I went. Their comments to me were before you protest you need to know exactly what you are protesting. Well, now I know what I am protesting…

This was not a movie for entertainment unless of course you were a white, physically fit, straight person. Not only did you attack individuals with intellectual disabilities, you attacked overweight people, people who are gay and I also felt you attacked black people.

Mr. Stiller, I watched an interview you did explaining how over the top some actors will go to portray their character, and that’s how you justified Robert Downey, Jr. playing a black man. But, it was you as the writer of this movie who came up with those lines and concepts.

Question to Mr. Stiller – when you studied “retarded people” did you study my 9 year old daughter who has Down syndrome or how about my nephew who has Autism? Who caught your eye as “the full retard”? Oh, and by the way did you not think that line would now be the catch phrase at every school in the nation? Is it not bad enough just to be retard, now it has to be full retard? Thank you for that.

Comment to Mr. Spielberg – with all the work you have done for the Jewish community and remembering the victims of the Holocaust did you forget that they also murdered individuals with disabilities and handicaps?

Shame on both of you for allowing this thing that you call an entertaining movie to be made. Will I protest on the streets with signs? No, I won’t waste my precious time anymore on this. You don’t deserve it.

Sincerely,

Suzie Smith
Mother of Lily who happens to have Down syndrome
Holladay, Utah

Boycott Dreamworks and “Tropic Thunder”

August 11, 2008

Below is an article written by Timothy Shriver concerning the movie “Tropic Thunder”. I am hoping that whoever reads this will agree with Timothy and choose to not see this movie.

As I was reading his article I could put my daughter Lily in most of those scenarios, and if Lily didn’t fit I could think of several other children I love that have Down syndrome that could fit. I hear the stories from parents about their children in school and work situations. There is a teacher here in Utah that said something along the lines of…in my world people like this shouldn’t exist. A doctor telling a mother that her child wouldn’t make in past 4 months, so do worry about doing anything. Children being left behind from fieldtrips, in empty classrooms. Recently I was told of a boss who called a friend of mine a terrible name. Nothing could justify what he called her, but she hadn’t done anything to provoke any kind of a comment. And, how many of us struggle and fight back tears when no one in the neighborhood wants to play with our children. I have several emails about that one!

While we have fought so hard FOR YEARS to get our children included and accepted, it takes one movie on one box office weekend to tear down everything that we have done. I will not be seeing the movie.

What ‘Tropic Thunder’ Thinks Is Funny

By Timothy Shriver
Monday, August 11, 2008; A15

I’ve been told to keep my sense of humor about the film “Tropic
Thunder,” which opens this week. Despite my requests, I have not been
given the chance to see the movie. But I’ve seen previews, read about
it and read excerpts of the script. By all accounts, it is an
unchecked assault on the humanity of people with intellectual
disabilities — an affront to dignity, hope and respect.

Consider this exchange:

Ben Stiller’s character: “There were times when I was doing Jack when
I actually felt retarded. Like really retarded.”

Robert Downey Jr.’s character: “Oh yeah. Damn.”

Stiller: “In a weird way, I had to sort of just free myself up to
believe that it was okay to be stupid or dumb.”

Downey: “To be a moron.”

Stiller: “Yeah.”

At another point, about acting like a person with intellectual
disabilities, they say:

Stiller: “It’s what we do, right?”

Downey: “Everybody knows you never do a full retard.”

Stiller: “What do you mean?”

Downey: “Check it out. Dustin Hoffman, ‘Rain Man,’ look retarded, act
retarded, not retarded. Count toothpicks to your cards. Autistic,
sure. Not retarded. You know Tom Hanks, ‘Forrest Gump.’ Slow, yes.
Retarded, maybe. Braces on his legs. But he charmed the pants off
Nixon and won a ping-pong competition. That ain’t retarded. You went
full retard, man. Never go full retard.”

I worked with the Farrelly brothers on a film on this topic. I know
about edgy comedy. I’m also told that movies are equal-opportunity
offenders.

So here’s an equal-opportunity response to the equal-opportunity
offenders:

People with intellectual disabilities are routinely abused,
neglected, insulted, institutionalized and even killed around the
world. Their parents are told to give up, that their children are
worthless. Schools turn them away. Doctors refuse to treat them.
Employers won’t hire them. None of this is funny.

For centuries, they have been the exception to the most basic
spiritual principle: that we are each equal in spirit, capable of
reflecting the goodness of the divine, carriers of love. But not
people with intellectual disabilities. What’s a word commonly applied
to them? Hopeless.

Let’s consider where we are in 2008. Our politics are about
overcoming division, our social movements are about ending
intolerance, our great philanthropists promote ending poverty and
disease among the world’s poor. Are people with intellectual
disabilities included in the mainstream of these movements? For the
most part, no.

Why? Because they’re different. Their joy doesn’t fit on magazine
covers. Their spirituality doesn’t come in self-help television.
Their kind of wealth doesn’t command political attention. (The best
of the spirit never does.)

Sadly, they’re such an easy target that many people don’t realize
whom they are making fun of when they use the word “retard.” Most
people just think it’s funny. “Stupid, idiot, moron, retard.” Ha, ha,
ha.

I know: I could be too sensitive. But I was taught that mean isn’t
funny. And I’ve been to institutions where people with intellectual
disabilities are tied to beds or lie on concrete floors, forgotten.
I’ve heard doctors say they won’t treat them. I know Gallup found
that more than 60 percent of Americans don’t want a person with an
intellectual disability at their child’s school.

I’ve talked to people with intellectual disabilities who cry over
being insulted on a bus. I’ve received too many e-mails from people
who are devastated not by their child’s disability but by the terror
of being laughed at, excluded and economically devastated.

It wasn’t funny when Hollywood humiliated African Americans for a
generation. It’s never funny when good and decent human beings are
humiliated. In fact, it is dangerous and disgusting.

This film is all that and more. DreamWorks went so far as to create a
mini-version of Simple Jack and posted it online. The studio has
since pulled it down, realizing it had gone too far, even in an age
of edgy, R-rated comedies.

So, enough. Stop the hurtful jokes. Talk to your children about
language that is bullying and mean. Ask your friends, your educators,
your religious leaders to help us to end the stubborn myth that
people with intellectual disabilities are hopeless. Ask Hollywood to
get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives
and our pocketbooks. We don’t live in times when labeling and
humiliating others is funny. And we should send that message far and
wide.

The writer is chairman of Special Olympics and a columnist for
washingtonpost.com’s On Faith discussion site.