Here is a wonderful response to the article I posted about on May 8 "Doomed from Birth to Death" . It was written by the president of the Nova Scotia Down Syndrome Society and was published as a reply in the Globe and Mail.
Down syndrome: rights doomed by the media
By RENATE LINDEMAN
Canada’s signing of the UN convention on the rights of people with disabilities on March 31, 2007, marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are included in their schools and communities, they get married, enjoy equal-opportunity employment. But beneath all this outward appearance of progress, a different message can be heard.
In Canada, this is not a heartening time to have Down syndrome.
"Doomed from birth to death" was the appalling title of an article published by the Globe and Mail on May 5. "Born with Down syndrome, she is dying slowly from Alzheimer’s disease …" The story then reports sad fact after sad fact, fragments of lives of people with Down syndrome after the onset of Alzheimer’s. What about all the years before Alzheimer’s? What about the thousands of Canadians with Down syndrome leading rich lives, holding meaningful employment and having loving relationships? Finally, what about the people with Down syndrome who never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.
While it is good to educate people on the tragic link between Down syndrome and Alzheimer’s, this stream of sad, negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow the progress of Alzheimer’s and make it more manageable are ignored. There is no mention of the promising research conducted right here in Canada by Dr. Weaver at Dalhousie University in Halifax (see article "Anniversary of Hope," http://dalnews.dal.ca/2007/05/03/Weaver.html). Nor does it mention the trial conducted by the Down Syndrome Research Foundation in British Columbia on the effects of vitamin E and prevention/delay of early onset of Alzheimer’s.
Instead, the newspaper seems bent on painting a bleak picture, with a headline that is sure to cause sensation and sell many copies. It is unthinkable any other group in Canada could have been singled out as being "doomed from the womb" without causing a riot.
"… The culprit appears to be the extra chromosome that shaped her brain and body in the womb …"
I question whether, if a person with Down syndrome develops Alzheimer’s at age 40, this should be viewed as inevitably "shaped in the womb," or rather as something that develops throughout the lifespan and can be treated. Evidence suggests the development of certain diseases (like Alzheimer’s) in people with Down syndrome is the result of a changed biochemistry due to the presence of the extra chromosome. "… Most people with Down syndrome have an extra copy (of the 21st chromosome), and it carries the instructions for a protein believed to play an important role in Alzheimer’s …"
Further research into the effects of this protein might mean that one day, it is possible to treat, delay or even prevent the early onset of Alzheimer’s (and/or other diseases).
Important and promising research in this and other fields, aimed at improving lives of people with Down syndrome, is being conducted around the world by a few dedicated scientists (Stanford University, Down Syndrome Research Foundations in Canada and United Kingdom, Nutri-Chem’s Kent MacLeod, etc.). Unfortunately, research has been largely ignored by the medical society. Is this because it is believed that Down syndrome will soon no longer be prevalent? Has the ability to identify Down syndrome in pregnancy, so relatively easy and cheap, shifted the whole focus to prevention (by aborting) rather than treating the complications of this syndrome? Has society really decided that lives with Down syndrome are not worth living or are these opinions forced down our throats by the media?
After singling out this group of people as "doomed" on the front page, the Globe and Mail then provided a public platform (online comments) on their website for some very extreme ideas ( http://www.theglobeandmail.com/servlet/story/RTGAM.20070504.walzheimer0505/CommentStory/Entertainment/#comments).
The "value" of people with Down syndrome was being questioned over and over, as they were accused of being unproductive and a drain on resources. "Value" for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a "burden" in these times of abundance, what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat.
Medical research advances at a dazzling speed now that genes can be identified as responsible for certain conditions. The many new ethical and societal dilemmas this creates are not being properly addressed.
Lives and opinions may have changed forever due to this article. Families who fought for decades to achieve inclusion and equal rights for their children now may have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents’ decision may be negatively influenced when faced with a pre-natal screening that is positive for Down syndrome. A woman may have to live the rest of her adult life in a group home, because her brother and sister-in-law are reconsidering their decision to offer their home after reading the article.
We cannot allow this vulnerable group of people, some of whom have no verbal skills, to be condemned in the media. I would like to recommend reading the article published in the New York Times of May 9 ( http://www.nytimes.com/
Renate Lindeman is the mother of two children with Down syndrome, and president of the Nova Scotia Down Syndrome Society. She can be contacted by phone at 902-434-0234 or by e-mail at firstname.lastname@example.org .