Archive for: November 2009
A “cure” for Down syndrome? — Reader feedback #6
This thread (starting here and here) questioning efforts to “cure” Down syndrome began with a quick email from Jenn Power, community leader at L’Arche Cape Breton, mother of identical twins with Down syndrome, and—disclosure—Contrarian‘s daughter-in-law.
At Contrarian’s request, she has elaborated:
In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society
Full post after the jump.
A “cure” for Down syndrome? — Reader feedback #5
Previous posts questioning the efforts to “cure” Down syndrome begin here and here.
Peter Elliott, Research Director for the Down Syndrome Research Foundation UK, writes:
In today’s world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome. Internal organs can be repaired, including Hersprungs where the baby can die within days of being born. Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for a host of illnesses. All of these can be treated with modern medicine and the children survive. Most will call these cures.
The last challenge is the mental handicap caused by a disturbance to the brain chemistry. We now know there is this chemical imbalance which not only effects and impairs short term memory it also prevents the fast processing of information and the formation and accessing of long term memory.
Full post after the jump.
A “cure” for Down syndrome? — Reader feedback #4
Previous posts questioning the efforts to “cure” Down syndrome begin here and here.
Silas Barss Donham, husband of Jenn Power, father of Josh and Jacob, and son of Contrarian, writes:
A person’s view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour. Most people in our society fall into the first group, but then, most people in our society don’t know much about people with intellectual disabilities. I suspect most people in our society wouldn’t imagine the second group exists.
This is related to one’s ability to appreciate the unique gifts people with Down syndrome offer to those around them. We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness. We see them as complete human beings who have a unique experience and viewpoint. Trying to “cure” this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.
Full post after the jump.
A “cure” for Down syndrome? – reader feedback #2
Shortly after I posted Jenn Power’s comments, a friend asked, “What if it were autism instead of Down syndrome — would you hesitate then? As if in reply, Contrarian received this email from David Croft, a Dartmouth father of two autistic children:
Sure, there are aspects of autism that I would like to better control in the boys. There are manifestations that, if they were removed, would make the boys more functional and easier to handle – but would the removal of these aspects likewise involve the removal of aspects of the boys that make them them?
David’s full comments after the break.
Does Down syndrome need to be “cured?” – reader feedback #1
Cathy Brady
Many readers have responded thoughtfully, and at length, to our post about Jenn Power’s reaction to news that Stanford University researchers had made headway toward a potential treatment for the cognitive impairment that is one feature of Down syndrome.
I’ve received a wide range of views from parents and researchers, about both Down syndrome and autism. Thanks to all who contributed.
Contrarian is on the road with limited Internet access. I’ll be posting these as I can over the next few days, more or less in the order I received them.
Several are quite long, and deserve to be read in their entirety, so look for an illustrative excerpt, with the longer submission after the jump.
Largest massacre of journalists ever
The Toronto-based International Freedom of Expression eXchange (IFEX) reports that at least 21 journalists were killed in a politically motivated massacre of more than 52 people in the Philippines this week. It is the largest group of journalists killed in a single incident ever. Abducted by armed men, many of the victims were beheaded and mutilated; some of the women were raped.
The dead were part of a convoy delivering candidacy papers for Ismael Mangudadatu, a local mayor and candidate for governor Maguindanao province on Mindanao island. Mangudadatu’s wife and several other relatives were among the dead.
The killings have received scant mention in the Canadian media. CBC reports that Philippine authorities have laid murder charges against a member of the powerful Ampatuan family, which is closely allied to President Arroyo, for whom they delivered crucial votes in recent elections.
The Aljazeera network has video [Content warning: some of the images are disturbing.]
Hat tip: Nick Filmore, who says the number of dead journalists
Does Down syndrome need to be “cured?”
Jenn Power, Community Leader of L’Arche Cape Breton, mother of twin boys with Down syndrome, and—disclosure—Contrarian’s daughter-in-law, had an interesting reaction to news that a Stanford University research team has made headway toward a potential treatment for the intellectual impairment that is one of Down’s symptoms: She welled up with tears.
The researchers probed the brains of mice genetically engineered to develop a rodent version of Down syndrome. They found that a region known as the hippocampus lacked a neurotransmitter that enables the brain to perform contextual learning. This is the process of gaining and applying knowledge in real-world situations—things like remembering where you left the car keys.
The team found that injecting the mice with a drug the brain converts to the missing neurotransmitter markedly improved their learning skills, albeit temporarily.
The lead researcher, physician and neuroscientist Ahmad Salehi, emphasized that this may not work in humans. He also pointed out that Down syndrome is a multifaceted condition, and cognitive impairment is just one of its characteristics.
“No kidding,” said Jenn.
Try incredible smiles, overflowing affection, stubbornness, great sense of humour, cute toes, love for orange pop and Rita MacNeil, endless capacity to forgive… the list goes on and on. I am not sure I can articulate why, but I find this article both upsetting (lump in my throat and eyes welled with tears right now) and disturbing. Why does everything need a “cure?”
I have mixed feelings about this. My grandsons, and the many L’Arche core members with Down syndrome (including the irrepressible David Gunn, pictured above in a photo by L’Arche assistant Amil Zavo), have taught me to appreciate the wonderful qualities that often accompany the condition.
On the other hand, I have seen Josh and Jacob struggle painfully with learning tasks that come easily to other children (and the pride and delight they take when they do learn a new skill).
We would not hesitate to treat the heart conditions that afflict many people with Down syndrome. So why does someone with Jenn’s great love for, and insight into, Down children and adults feel so troubled by the theoretical possibility of treating their intellectual impairment?
Jenn didn’t elaborate, but I think it’s natural to wonder whether the quest for a “cure” arises out of, or at least accords with, the undervaluing of people with Down syndrome that is so prevalent. I also wonder about the impact a chemical treatment might have on the wonderful aspects of Down Sydnrome.
This issue may get wrapped up in the emerging debate about smart pills, discussed in the October issue of Scientific American.
I suspect Dr. Salehi has heard these misgivings before. Contacted by Contrarian, he kindly offered to comment on this blog post. I look forward to his observations, and those of Jenn or anyone else who wishes to respond.
Kady smells a stonewall
The CBC’s Kady O’Malley brings prescient analysis—and that rarest of journalistic qualities, a political memory—to the Conservative scheme to fabricate a dastardly opposition “refusal” to hear diplomat David Mulroney rebut fellow diplomat Richard Colvin’s account of how Canada turned a blind eye to Afghan security officials’ torture of detainees our forces turned over to them. Here’s the plan:
- Refuse to turn over documents bearing on Colvin’s testimony. Invoke national security, of course.
- Have Mulroney show up, uninvited, and demand to be be heard immediately, before MPs have any opportunity to prepare for his testimony, let alone see the documentary evidence bearing on his behaviour in Afghanistan.
- Howl in phony outrage over the opposition’s refusal to let Mulroney “clear his name” after Colvin’s “completely unfounded” allegations.
O’Malley points out that this is exactly the same strategy the Harper Government used last year when a pesky Commons committee investigated illegal Conservative campaign financing.
Throughout that week of special mid-recess hearings in August 2008, a series of party-connected witnesses alternately failed to appear, citing improper service, or, in a few memorable instances, deliberately did so on days when they weren’t actually listed on the schedule, whereupon they would demand to be allowed to testify immediately. When gently but firmly rebuffed by the chair, they would storm out of the room to the waiting media throng, insisting all the way that they were being silenced by the tyrannical opposition majority.
In fact, I was sitting not more than a few inches away from the party’s then-political director, Doug Finley—now, of course, a senator—when he showed up, bright and more than a little early, three days before he was scheduled to appear. Squeezing himself in at the table alongside the scheduled witnesses, he informed the chair he was ready to take questions; after he was, entirely predictably, rebuffed, he very nearly had to be removed by Hill security when he refused to vacate the seat. When his name came up on the witness list later that week, however, he was nowhere in sight.
And how is her analysis holding up? So far Mulroney has asked to appear before the committee, and, unbidden, boarded a plane from China to Ottawa for that purpose. In the Commons yesterday, Prime Minister Stephen Harper urged MPs “not to muzzle” civil servants who want to rebut Colvin’s testimony.
Opposition members of the committee have asked to see cabinet minutes from the time, all memos to and from Colvin, and human rights reports given to the defence department. Harper says the government “has and will continue to make all legally available information available.”
Legally available. You know. The ones that don’t have to be withheld to protect national security.
Faroese sunrise
The sun rises this morning over Nólsoy, one of the Faroe Islands and the site of the world’s largest storm petrel colony. The photo was taken from the town of Tórshavn, seat of the Løgting, the 1,000-year-old Faroese Parliament (and one of the oldest legislative bodies in the world).
MacKay stoops lower
A Contrarian reader writes:
If only it were true that they were back peddling. In tonight’s news, MacKay is heard sinking to new depths of loathsomeness by accusing Colvin of impugning the integrity of Canadian troops. He obviously hoping Canadians will turn against Colvin if he can be made to look as if he’s attacking the military. How much more cowardly and disgusting can you get than using the military as a red herring to draw attention away from your own behaviour. I’m beginning to feel slimy just being in the same country with this guy.
Contrarian is out of the country, where my ability to follow the torture scandal over the last few days has been fragmentary. If my correspondent’s account of MacKay’s performance today is halfway accurate, it deserves the appellation loathsome. I hope others will call him on it.
As a placemarker, I want to flag another point for later elaboration: As first noted by Kady O’Malley in our raucus panel on CBC’s Power and Politics Friday, many in the mainstream media have done an exceptionally good job covering this story. The bits and pieces I’ve seen yesterday and today (in part thanks to tweets and e-mails from WLR at National Newswatch) has featured a steady stream of new revelations from Canadian Press, the Star, the Globe and Mail, CBC, and others—none of it flattering to the Harper Government’s crude spinslingers. Confirmation yet again that there is no substitute for good old-fashioned reporting.
