We are who we are and we love who we are

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 reaction to Forrestall’s complaint. I replied:

I am not quite in the camp of those who reject any attempt to treat Down Syndrome, but I certainly understand why people with Down Syndrome and their parents (and grandparents) bristle at the assumption they need to be “fixed.”

J&J1I can only view this through my feelings about Josh and Jacob. They get excellent medical care. They have had tubes in their ears to deal with chronic infections. Josh has had heart surgery. These conditions and others result at least in part from their chromosomal distinctiveness. No one thought twice about whether they should be treated. Of course they should.

But what about the constellation of qualities that include, but are not limited to, their intellectual disabilities? These qualities are a huge part of who they are. Without them, they would be totally different. There will never be a magic bullet that increases their IQs but leaves their humour, affectionateness, willfulness, stubbornness, loyalty, laziness, warmth, and joyfulness untouched.

When I see Josh and Jacob struggle to read the simplest words, or to make their garbled speech understood, sure, I wish life were easier for them. But I don’t long for them to be different, or more like other children. I adore them as they are.

And by the way, there is already a genocide of children with Down in the form of selective abortions. We would not countenance this for sex selection or red hair or gayness, but we take it for granted with Down Syndrome.

Today, Mike Finnerty, summer host of CBC Radio’s The Current, carried out a series of interviews on this subject—with one of the Massachusetts researchers, with Renee Forrestall, and with Christie Hoos, a parent of a Down syndrome child whose views differ from Forrestall’s. By themselves, these interviews would have made a thought-provoking segment. What really set the piece apart was Finnerty’s final interview with Halifax actor and freelance photographer Will Brewer, who has Down syndrome, a conversation conducted without a trace of condescension on Finnerty’s part.

You can listen to the program here (after a CBC promo):

Here is a transcript of Will Brewer’s comments:

Mike Finnerty: Will Brewer was born with Down syndrome. He’s a photographer and an actor. Will, thanks for coming in and welcome.

Will Brewer: Thank you.

MF: What do you make of this scientific breakthrough we’ve been talking about?

WB: I was surprised. It would be hard for me to think about that because I am who I am, and I love who I am.

Actor Will Brewer on the set of the Wendy Lill play, Corker

MF: Can you tell us about what sets you apart in your on mind. What do you think it is about you and the fact that you are someone with down syndrome that makes you different to others, special from others?

WB: Well, I am so special because my mom says that I am magic. But I would say that everyone with Down Sydnrome is magic because I see it in their eyes when I take their photo. I can tell that they are happy of who they are and how they came out, and who have loving parents who are just superb at what they do.

MF: Is there anything about your life that you would change if you could?

WB: No. I just. I am happy where I am because now I have found a place where I can create art and have friends and have great relationships with people who I care about, and people who have — beautiful; magical children with Down Syndrome.

MF: If you were to think about your life — you know, your 24 hours a day, seven days a week — what percentage of your life would you say is happy or joyous and what percentage is unhappy?

WB: Sometimes I do have issues. Sometimes I just feel like crying sometimes, for no particular reason, because I think that’s part of who I am, because I do have sensitive thoughts as well, but in everyday life, I enjoy it.

MF: Specifically, do you have issues — health iussues and other kinds of things that are, you know, not good in your life that you would, if you could, using these new therapies that might come down the road, that you would fix?

WillBrewer2WB: Well, 28 years ago, when I was born, I couldn’t breathe — or like, I couldn’t cry when I was born. So a couple months later, I had heart surgery. And I do have a thyroid condition as well.

MF: What do you think about the idea that sometime in the future you could, through medical intervention, correct or suppress that extra chromosome and that would mean that they’re weren’t people who had down syndrome? What would you think of that?

WB: I would think it would be very interesting to actually see that because, I do have friends who are not Down syndrome as well, and I don’t kow if they would want to change themselves. But I would never change. That’s who I am.

MF: What would you like people out there who are listening to know about your life as someone with down syndrome?

WB: Well, first of all, if they want to have a picture taken, they should come to me (laughs)

MF: Because you are a photographer?

WB: Of course.

MF: Are you a good photographer?

WB: Oh I really am.

MF: And what else would you like people to know?

WB: That we are who we are and we love who we are. We want a place in this earth, in this generation, in this life of everyday, and we are proud of who we are.

MF: Will, thanks for talking to us.

WB: Thank you.

Almost four years ago, 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. Like Renee Forrestall, Jenn Power, community leader at L’Arche Cape Breton and mother of my twin grandsons with Down, 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.”

The fascinating discussion that followed produced many thoughtful contributions on all sides of the issue. (There are too many posts to link individually, but if you click here and scroll back to the earliest posts you will find them all.) The Contrarian discussions eventually spread to the New York Times parenting blog Motherlode, where hundreds of people weighed in.

Power has also blogged thoughtfully about today’s interviews by Mike Finnerty on the Current, as has Christie Hoos, the mother of a Down child who is more open to the idea of treatment.


Mulcair’s CBC boycott ends

Contrarian reader Michael Colborne points out that NDP leader Tom Mulcair’s boycott of CBC Radio’s English service, if that’s what it was, ended tonight with an interview on As It Happens.

He sounds like a guy who can take on Harper successfully. To do that, he’d be wise to avoid peevish boycotts in future (and that’s advice from someone who’d love to see him succeed).

Mulcair’s boycott of CBC Radio

I’m glad Thomas Mulcair won the leadership of the NDP Saturday. He has the best shot at retaining at least some of the party’s beachhead in Quebec. He’s said to be tough and politically shrewd, both of which he’ll need to be when dealing with the wily Stephen Harper. He clearly plans to edge the party toward the centre, ala Darrell Dexter and other successful NDP premiers, and that’s a good tactic when facing a government of right wing ideologues.

But I’m not without a few qualms, including Mulcair’s reputation for carrying grudges, and his occasional bone-headed statements on foreign policy, including his knee-jerk support for right-wing Israeli policies that pose a danger to Israel and the world.

My qualms are not eased by Mulcair’s silly, and thus far unexplained, spat with CBC Radio’s English service. Mulcair boycotted English CBC Radio throughout the campaign and in the days since. He refuses to explain the boycott, or even own up to it, but his rejection of interview requests is too consistent to be happenstance. If anyone else knows what stuck in his craw, I haven’t heard the explanation.

Perhaps Mulcair has been impressed at how successfully Harper buffaloed the national press corps by treating it with contempt. On CBC Radio’s Sunday Edition, Francine Pelletier lamented the gallery’s failure even to protest Harper’s continuing refusal to hold news conferences.

I don’t like having a prime minister who bullies the press. I don’t like press gallery reporters who respond like whipped spaniels. And I won’t take warmly to an NDP leader who is tempted to follow the same recipe.

Why pols use talking points

Professors of journalism or public relations would do well to save a copy of today’s episode of CBC Radio’s “The House” for a classic example of how a politician can use talking points to hornswoggle an overly deferential interviewer.

At about 14 minutes into the program, Evan Solomon asks International Trade Minister Ed Fast an obvious question about the recent spate of US protectionist measures aimed at Canada:

Why are you being caught off guard by these sudden protectionist measures coming out of the US?

Fast responded with a set of talking points so scripted, you can almost hear him rhyming off the bullets:

  • We’re focused on removing trade barriers rather than erecting new ones.
  • Canada and the US have a strong, mature, longstanding trade relationship.
  • It’s the biggest trade success story in the world.
  • And when we see our cousins to the south introducing new barriers to trade, obviously that raises concerns with us.
  • That’s why I’ve been engaging with my counterpart in the US, US trade representative Ron Kirk. I’ve spoken to him on a number of occasions. I’ve spoken to his deputy on a number of occasions.
  • My colleagues in the house of commons have also been engaging with their counterparts in the house of representatives and the senate.
  • We are impressing upon the Americans that trade barriers actually hurt both Canadian businesses and American businesses because out economies and our supply channels are so integrated.

The heavy-handed messaging couldn’t quite obscure one obvious fact: Fast never answered the question. So what did Solomon do? He ignored the omission and moved on to the next question. A better response would have been:

Excuse me but, I didn’t hear why you are being caught off guard by these sudden protectionist measures?

I don’t mean to gang up on Solomon, but I wish he and other press gallery habitues would curb their recent habit of addressing cabinet ministers as “Minister.” We expect this formal obsequiousness from the tribe of ministerial aides who populate The Hill, but when reporters adopt this style, it contributes to the deferential atmosphere that lets responsible cabinet ministers dodge questions and escape obvious follow-ups.

J-school profs will get a bonus from today’s House episode. In the show opener, Solomon questions Defence Minister Peter MacKay about the seemingly endless increases in the cost of those second-hand submarines Canada bought from Britain. Current estimates stand at $1 billion, and could triple before the subs are fully operational. In response, to his credit, MacKay passed up a chance to slang his Liberal predecessors for the buying the subs in the first place, but he couldn’t resist exploiting the recent death of a Canadian soldier for rhetorical effect.

Let’s not forget one important fact, and that is, we have men and women in uniform who literally put their lives on the line in service of Canada to protect our citizens. Men like the gentleman who gave his life, Janick Gilbert, who was a SAR-tech, who gave his life on a rescue mission this week near Hall Bay, Nunavut. These are exceptional citizens, to say the least, and they require extremely sophisticated and, yes, expensive equipment to do that work. When it comes to putting people in harm’s way, but giving them world class protection, and that’s the calculation and that is the measure that we have to make.

This time Solomon did not disappoint:

Well you mentioned, speaking of world class equipment, that the ideal piece of equipment would be a nuclear submarine, not the diesel-electric submarine. Therefore if you want to be committed to the best equipment for the men and women serving, are you considering purchasing nuclear submarines?


No we’re not….We don’t live in an ideal world. My grandmother had a saying that, “If wishes were horses, beggars could ride.” We don’t have unlimited resources and we’re not contemplating nuclear submarines.

Ah, so it turns out that protecting men and women in uniform who “literally put their lives on the line in service of Canada to protect our citizens” is, like everything else in life and government, subject to financial limits and budgetary constraints.

Lastly, points to Solomon for knowing how to pronounce the word “nuclear,” unlike the Minister of National Defence.

From the folks who brought you a non-random, self-selecting census

A report last week in the prestigious scientific journal Nature revealed that the hole in the ozone layer over the Arctic was the largest ever recorded—comparable for the first time to the man-induced hole that appears every year in the ozone layer over the Antarctic. But when reporters asked Canadian scientist  David Tarasick, who was involved in the study, to explain its findings, Environment Canada refused to let him speak.

David Tarasick, muzzled by Environment Canada

Environment Canada scientist David Tarasick, whose team played a key role in the report published Sunday in the journal Nature, is not being allowed to discuss the discovery with the media.

Environment Canada told Postmedia News that an interview with Tarasick “cannot be granted.” Tarasick is one of several Environment Canada ozone scientists who have received letters warning of possible “discontinuance of job function” as part of the downsizing underway in the department.

Meanwhile, the Harper Government is cutting back on ozone monitoring. CBC Radio’s Quirks and Quarks host Bob MacDonald decries the government’s behaviour:

How has this country turned from a world leader in environmental protection, to one where scientists are forbidden to speak and the government seems to have turned its back on environmental protection?

….Scientists are our eyes on the planet. Their detailed monitoring of changes to the atmosphere, water, and movements in the ground, give us a window into the complex interplay of the Earth’s many systems. They also see how human activity has an effect on those systems and the courses they will take in the future.

Over the long term, the scientists see trends, such as warming temperatures, loss of Arctic sea ice, shifting ocean currents or changes in biology, that are used to make predictions about the type of world our children will inherit.

H/T: Elizabeth May

The CBC defended

A reader writes:

I understand you dislike CBC.  Well that is fine for you, but for those of us who don’t want to listen to the local shows made up of canned music and dubious prattle, the CBC treats their listeners as intelligent human beings. Just don’t listen if you dislike the station.

Point taken. I feel odd defending myself against the proposition that I dislike the CBC, but given recent posts (here and here), I suppose it’s an understandable assumption. As an immigrant who came to Canada after my schooling had ended, I learned most of what I know about Canada from CBC Radio. It was an institution I treasured. I got used to holding it to a high standard, and lately, I’m disappointed a lot. I used to listen all the time. Now I listen much less, and when I do, it’s often via podcasts (with Spark topping the list), perhaps as a way of avoiding the stuff that propels me to toss off snarky posts.

Davis wastes first Massey lecture

Wade Davis-2Pop anthropologist Wade Davis, the first of whose CBC Radio Massey lectures¹ just ended in the Atlantic time zone, obviously has a lot of knowledge to impart about the Earth’s diverse human cultures. So why did her  waste a good half of the opening talk shooting racist fish in a 19th Century barrel? Davis’s point was that the errant 19th Century “science” of physical anthropology dripped with colonial arrogance, but the thinly disguised subtext seemed to be Davis’s own moral superiority to these imperial prigs.

The effect was both distasteful and boring, like listening a 21st Century astrophysicist satirize the Ptolemaic conceit of Earth as center of the universe. Yes, Wade, we know the Earth is not flat, and brown-skinned people are not inferior. Congratulations. Can we move on please? Ironically, toward the end of his lecture, Davis himself slipped into a bit of 19th Century noble savage romanticism.

The thesis of Davis’s Massey lectures—that Earth’s myriad cultures are “humanity’s greatest legacy… the product of our dreams, the embodiment of our hopes, the symbol of all we are and all that we have created as a wildly inquisitive and astonishingly adaptive species”—holds promise. Now that Davis has flashed his credentials as an enlightened egalitarian, let’s hope the remaining four talks deliver on it.

¹  I cannot link to the audio file, because the Ideas’ producers have not seen fit to post it. Why is it that Ideas, the CBC show that could benefit most from the time-shifting and archiving potential of streaming audio, has been among the slowest to adopt it?

A shocking coywolf attack in Cape Breton – updated

Skyline Trail-sA very sad update: The woman attacked by two coywolves succumbed to her injuries overnight. Deepest sympathy to her family and friends for their unimaginable loss.

– – –

The shocking news that a 19-year-old Toronto-area woman was attacked and “very, very seriously” injured by a pair of coyotes in the Cape Breton Highlands National Park this afternoon will undoubtedly focus attention on recent reports that Eastern Coyotes are in fact a hybrid of coyotes and wolves, or coywolves.

We offer heartfelt hopes for a speedy and complete recovery for the unidentified woman, who was hiking on the popular and well used Skyline Trail north of Cheticamp—a trail Contrarian has often hiked with family and friends. The injured woman has been airlifted to Halifax, where she is in critical condition. RCMP officers who happened to be nearby came to her assistance. They shot and apparently wounded one of the animals; however both escaped into the woods.

CBC Radio’s Quirks and Quarks recently interviewed Dr. Roland Kays, Curator of Mammals at New York State Museum, about genetic testing he carried out on coyotes in that state, indicating that, as they moved east, coyotes interbred with remnant wolf populations:

Coyotes are a newcomer to Nova Scotia, the earliest confirmed specimin having been taken in Guysborough in 1977. The 30- to 50-pound Eastern Coyote is larger and darker than its western cousin, and typically occupies woodlands, not the grassy habitat favored by pure coyotes.

Coywolf-csKays found that the head and jaw of the coywolf are better adapted for taking down the white tailed deer that flourish here. In effect, as the coyote took over the wolf’s ecological niche in eastern North America, it became part-wolf.

The Knight Science Journalism Tracker has links to more stories about the coywolf, including articles from AAAS Science Now, Discovery, and Scientific American.

Canadian Press quotes Nova Scotia Department of Natural Resources spokesman Don Anderson as saying a young Ontario girl was bitten several years ago on the Skyline Trail. “That coyote was put down and sent away for testing and it came back negative for rabies or anything like that,” he said.

Hat tip: SP.

CBC Radio iPhone app finds the Maritimes

The CBC Radio iPhone app has finally been updated, and now includes live streams from Halifax (and Fredericton and Saint John, but not Sydney or Charlottetown), and from at least one location in every Canadian time zone.

The app allows on-demand access to many good CBC Radio shows, but alas, only to “highlights” of Ideas, whose producers have for some reason been glacially slow to grasp the importance of the Internet’s time-shifting potential for this program.

Hat tip: Scott Gillard.

CBC Radio’s iPhone app finds Nova Scotia (pretty soon)

CBC Radio Ap-sCBC is awaiting approval from Apple for an update to the terrific CBC Radio iPhone app. The updated version, which should appear on  iTunes soon, will include live streams of CBC stations Halifax, Calgary, Edmonton, Fredericton, Grand Falls, Moncton, Ottawa, Regina, Saint John, St John’s, Thunder Bay, Windsor, and Winnipeg. (Can Sydney be far behind?)

The original app (free download here) did not include any streams from the Mountain, Central, or Newfoundland time zones, and only Goose Bay in the Atlantic zone. Stations in the missing locations streamed in Windows Media format, which the app could not handle. As stations switch to MP3 streaming, they can be added to the app via updates like the one that’s pending.

In areas with marginal radio reception, but good WiFi or cell signals, the app beats the hell out of radio. You can time-shift effortlessly to catch an interview you missed, and you can hear many CBC programs on demand. You can do this on your computer as well, though less easily, but not in a car or out walking.