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Monday, October 29, 2012

Proclamation 5252

A brief history about National Down Syndrome Awareness Month...and a picture of my reason for recognizing October as Down Syndrome Awareness Month:

October was first designated Down Syndrome Awareness Month by the National Down Syndrome Society in 1981. I'm not sure why October was chosen, it wasn't to coincide with the Buddy Walks as those started much later - in 1995.

The NDSS spearheaded this awareness campaign and in 1984 Congress, by Senate Joint Resolution 254, designated October as National Down Syndrome Awareness Month and authorized and requested President Ronald Regan to issue a proclamation in observance of this month.

It's interesting to read Proclamation 5252 that was made 28 years ago and see how things have changed. 28 years doesn't seem that long ago, but there were some things that stood out to me when reading it.

- it was written Down's (which is interesting because in 1975, the United States National Institutes of Health convened a conference to standardize the nomenclature of malformations. They recommended eliminating the possessive form: “The possessive use of an eponym should be discontinued, since the author neither had nor owned the disorder.”)

- The proclamation reads, "This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps. Down's syndrome, a condition once thought to be without hope of positive change, is one of the best symbols of this changing attitude." Yet it feels like families and self-advocates are still fighting to show the potential that people with Ds have.

- The proclamation talks about researching uncovering the genetic basis for the condition and 'points the way to it's ultimate prevention.' I admit to thinking, 'ouch!' when reading that. The ultimate prevention of Down syndrome? Why was that put it in a proclamation that earlier stated enlightened understanding recognized that people with disabilities have great potential for achieving and overcoming handicaps? Not to mention the fact that you simply can not prevent Down syndrome from happening since it occurs at conception. (Well, in IVF you can by screening before implantation). You can prevent babies who have Down syndrome from ever being born, but you can not prevent Down syndrome from happening.

- The statement about pointing the way to it's ultimate prevention seems in direct contradiction to how the proclamation ends; imploring everyone to unite in October in support of observances and activities that will assist individuals with Down's syndrome and their families to a fuller and more rewarding life.

- Despite the reference to 'ultimate prevention' I am grateful that there is a Down Syndrome Awareness Month.

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Runningmama said...

Great picture! I didn't know any of this, thanks so much :-)

ahoy.jenni said...

Thanks, I can't stand it when people say 'down's ' so now I will be able to correct them and explain why!
More amazing information in your posts!
And another beautiful photo of your daughter.

Anonymous said...

you are a true advocate not only for beautiful Kayla , but for all individuals with Down's Syndrome. And I know that you have mentioned in other articles you have written that "why it is called Down's 'is because the doctor who discovered the syndrome ,his last name is Down. I truly Love my granddaughter Kayla because she is who she is full of personality, humor, fun, loving, smart, beautiful, amazing, compassionate and more!! she is her own person. love mom/memaw

Anonymous said...

Thanks for ur blog a friend on FB recommended it. We just found out yesterday and are feeling alot of emotions but are thankful for the people out on the web who have gone before us and are willing to give their wisdom thanks Ryan