Last month, University of Massachusetts scientists working with laboratory cell cultures said they had succeeded in suppressing the extra chromosome associated with Down syndrome, a technique they predicted could lead to treatments targeted at the symptoms of the condition. Halifax resident Renee Forrestall, whose 22-year-old daughter Marie Webb has Down Syndrome, condemned the research as akin to cultural genocide. We've got a genetically similar community, visible minority who are being targeted and terminated globally. People think, "Well, this is the way it is and these people just shouldn't be." A friend who knows I have identical twin grandchildren with Down Syndrome sought my...

02 August, 2013

Sydney's Weird Beard Troupe, a black light theatrical group featuring puppeteers with Down syndrome, holds its debut performance at Cape Breton University's Boardmore Theatre Friday. This being 2012, they've released a great trailer (best viewed full screen): The inaugural production features a modernized, hippified re-make of the the Tree Little Pigs fable. All the live shows sold out early, but a CD and storybook is available. [Disclosure: Contrarian had a small role in the production's scriptwriting.]...

25 April, 2012

When people learn that my son Silas and his wife Jenn Power adopted a pair of identical twins with Down Syndrome, they often say one of two things: "I could never do that," or "You must be saints." I love Silas and Jenn beyond measure, and admire them hugely, but I can attest they are not saints. The explanation for their decision to adopt Josh and Jacob lies elsewhere. As members of the L'Arche Community in Iron Mines, Orangedale, and Mabou, Cape Breton, Silas and Jenn have lots of experience working and living with developmentally disabled people. It's what they like doing,...

08 October, 2011

This winter, Contrarian hosted an interesting discussion about whether Down syndrome needs a cure. Now reader Denis Falvy offers an intriguing footnote. It seems that people with Down syndrome rarely get tumors. Recent research at Children's Hospital in Boston, reported in the journal Nature, suggests that a gene (gene 231) on the extra chromosome (chromosome 21) carried by people with DS may inhibit cancer by blocking the activity of a protein tumors need to grow. Money quote: The gene suppresses the growth of new blood vessels that cancers need by blocking the activity of the protein calcineurin, suggesting a new target for...

07 March, 2010

[caption id="attachment_4532" align="alignleft" width="150" caption="Pedro Almodóvar"][/caption] Last Thursday, the Cape Breton Island Film Series showed Pedro Almodóvar's Broken Embraces, which Roger Ebert describes as, "a voluptuary of a film, drunk on primary colors, caressing Penelope Cruz, using the devices of a Hitchcock to distract us with surfaces while the sinister uncoils beneath." It's a lush, layered melodrama, with lots of surprises hidden among its folds, including this utterly unexpected footnote to Contrarian's conversation about whether medical science should try to "cure" Down syndrome. The central character, Harry Caine (Lluís Homar), is a movie director who turns to script-writing after a brutal car...

20 February, 2010

Silas Donham responds to posts on the New York Times Motherlode blog criticizing those who would reject potential chemical treatments intended to improve intellectual function of infants with Down syndrome. This difficult topic provoked a debate here on Contrarian that was remarkably thoughtful and respectful. But when the Times picked up on our discussion, many commenters were incredulous that any parent would hesitate accept such treatments for their children. A few had nasty things to say. Silas responds: First, the disclosure: I am Jenn Power's husband, father to Jacob and Josh, and son to contrarian.ca, the blogger who got all this...

14 January, 2010

For those who have followed the debate over potential treatments for Down syndrome in the New York Times parenting blog Motherlode to its source here on Contrarian, I have assembled a series of links you might want to follow. Our discussion of this issue began with this post back in November. Jenn Power elaborated on her concerns here, and Dr. Ahmad Salehi, the Stanford researcher whose work touched off the discussion, responded thoughtfully here. Jenn's husband Silas Barss Donham, my son, weighed in here. Other reader commented here, here, and here. Jenn is the community leader of L'Arche Cape Breton in Iron Mines,...

13 January, 2010

Motherlode, a New York Times blog on parenting, has picked up on Contrarian's discussion about potential treatments for the intellectual impairment associated with Down syndrome — and touched off quite a debate of it its own. Our own discussion began with L'Arche Cape Breton Community Leader Jenn Power's disquiet at the assumption that Down syndrome constitutes a disease in need of curing. Jenn, who is both the adopted mother of identical twins with Down Syndrome and — disclosure — my daughter-in-law, spoke eloquently of Down traits that don't need fixing: [I]ncredible smiles, overflowing affection, stubbornness, great sense of humour, cute toes, love...

13 January, 2010

Haligonian Warren Reed has a sobering take on our discussion about potential "cures" for people with Down syndrome: I am still stuck on the Down Syndrome thread.  As Canadians with disabilities will tell you, Canada has a medical model of disability. The approach is, "let's fix what's wrong with you," rather than, "let's fix what's wrong with us." Hence the inaccessible buses, devilish sidewalks, and antediluvian building codes. The result is a hidden and large group of people who are disenfranchised, undervalued, ignored, and sometimes abused.  See the shocking account in Monday's Chronicle-Herald. One of my big defeats was an unsuccessful complaint...

11 December, 2009

In late November, Contrarian reported that researchers at Stanford University had used a drug therapy to improve the learning skills of mice with a form of Down syndrome. Jenn Power, community leader at L'Arche Cape Breton and mother of twin boys with Down's, found the research distressing. She said people with Down's don't need a cure; they need "a society that values what they have to offer." This produced a fascinating discussion with many thoughtful contributions on all sides of the issue. At Contrarian's request, Dr. Ahmad Salehi, M.D., Ph.D., the lead researcher on the Stanford University study, has responded to...

09 December, 2009
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