Saturday, February 23, 2008

Down Syndrome Belongs

The first close up face you see on this video is our Alfie (in the stripey shirt).

Thursday, February 21, 2008

Well, that was quick!

I wrote that letter (below) in the morning and I know about four other people who also wrote. The mis-information on the Toronto Sick Kids website was removed by 2pm. It just goes to show that it is worth writing a personal letter - even a few letters can affect some change.

I do hope that Toronto Sick Kids can now keep the horrendous information on Down syndrome that they were posing as 'fact', off their website. Not wanted to upset parents, I'm not going to go into details about the content of what they had posted - suffice to say that if there was a Disability Discrimination Act in this country, it would have been illegal to publish it.

Wednesday, February 20, 2008

Toronto's Sick, Kids

The Toronto Hospital for Sick Kids has some very upsetting, unbalanced, and in many places, untrue information about Down syndrome on it's A to Z of Health. Many parents have written to them to ask them to take these pages down. Following an article in the Windsor Post, Sick Kids did withdraw the pages for a few days, pending review. They wrote to me saying that they would involve families of people with Down syndrome in the writing of the new pages. However they are now back up - with no changes!

I have written one email to the director in charge of these pages (Ross Hetherington) and their media liaison officer (Robin Marwick) I am now going to find the name of their head of sponsorship, and write to that person, and TD Securities - their main corporate sponsor. The fact that they are purposely posting misinformation is hurtful, damaging, and undermines their reputation as a health care provider for all children.

I can only imagine what I would have thought, if upon finding out about Alfie's diagnosis I had stumbled upon this pile of propaganda rather than the factual and balanced information that the UK Down Syndrome Association provided.

I am shocked that the Canadian Down Syndrome Society have not launched a full-scale campaign against this. Please take the time to email Robin Marwick and Ross Hetherington yourself (see their email addresses below).

Subject: RE: A - Z health

Dear Robin Marwick
I am disgusted that following your review of your pages about Down syndrome your organisation has chosen to repost them with no changes.
Much of the information posted on these pages is not true. It is misleading, is based on personal opinion rather than fact, and denigrates Toronto Sick Kids' reputation as a leader in science and health.

As a parent of a child who has Down syndrome, a child who is not in the least bit frustrated or impatient or angry - and is in fact a great deal more relaxed than my other son, I am furious that you should be printing such offensive material. To what end? I believe that this is part of a policy to encourage people to terminate their pregnancies - a continuation of the type of attitude that for generations directed parents to put their children in institutions.

I am proud to be pro-choice, and believe that by publishing such propaganda, Toronto Sick Kids is limiting that choice for women and all prospective parents.
You should be ashamed to work for such an organisation.

Alice Evans