Sunday, May 13, 2007

NSDSS Response to the Globe and Mail

I just wanted to share with you the extremely powerful and well written media release by Renate Lindeman, who started up the Nova Scotia Down Syndrome Society, in response to the Globe and Mail's article entitled "Doomed from birth to death":

Down syndrome; Doomed by the Media

The signing of the UN Convention for the rights of people with disabilities by Canada on March 31st, 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.
Today, in Canada, it 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 5th, 2007. ‘….Born with Down syndrome, she is dying slowly from Alzheimer’s disease...’ The reporter then proceeds to report 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 that never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.

It is one thing to educate people on the tragic link between Down syndrome and Alzheimer’s, but the stream of negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow down 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’). 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 reporter 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 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 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 shoved down our throats by ignorant or biased reporters and editors?

After singling out this group of people as ‘doomed’ on the front page of the Globe and Mail, the newspaper then provided a public platform (online comments) on their website for some very extreme ideas.
Much of the language used in the comments should not be reprinted and it suffices to say that some very extreme ideas were being voiced. People with Down syndrome were being referred to as patients, dogs and stuffed animals.
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 responsible for certain conditions. The many new ethical and societal dilemmas’ this creates are not being properly addressed.

Lives and opinions have changed forever due to publication of this article and people are left dealing with the damaging effects long after this reporter’s ‘day of front page fame’ has passed. Families who fought for decades to achieve inclusion and equal rights for their children now have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents whose 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 live 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 on the front page of a leading National newspaper. This is an example of negative, biased and discriminatory journalism. For some excellent reporting on Down syndrome, objective and balanced, I would like to recommend reading the article published in the New York Times of May 9, 2007.

I am the mother of two beautiful children with Down syndrome, who are definitely not doomed, and the president of the Nova Scotia Down Syndrome Society. I can be contacted via www.novascotiadownsyndromesociety.

Renate Lindeman
Mineville, Nova Scotia

1 comment:

L. Noelle said...

Hi Alice, I was just wondering if everything is ok? I haven't seen you post in a long time! Let me know how you are doing!