Tagged: L’Arche Cape Breton
The purpose of country music, explained
Cape Bretoner Gordie Sampson now lives in Nashville, where he produces about 75 song demos a year, mostly in the country-pop vein. In a CBC Radio interview this morning, he reflected on what makes country music different:
I write country song for the most part… The lyric is more important in this genre than really any genre I think. The lyric and the melody together really has to move the listener. In R&B or other types of modern music, the idea is to make people dance. In country music it’s, often times, its to hurt people’s feelings. To make them re-think that relationship that they just ended last week. It’s a bit more visceral.
The full interview, part of the Information Morning Cape Breton’s excellent Leaders in their Field series, is we well worth a listen. Gordie will be back in Cape Breton Sunday for the Cape Breton Island Film Series annual benefit for l’Arche Cape Breton.
Shocking research: People with Down syndrome are happy. So are their parents.
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, and they’re good at it. Like most people who spend time at l’Arche, they describe the experience as one of blessings received more than bestowed.
This week comes scientific evidence they are not alone. Researchers at Boston’s Children’s Hospital and other centers carried out one of the largest surveys every conducted of people with Down Syndrome and their families. Respondents with Down reported overwhelming happiness with their lives, and family members said having a child or sibling with Down had been a positive experience.
The researchers published three studies on their findings in the October issue of American Journal of Medical Genetics. Their study sought to answer the questions most commonly asked by prospective parents of children with Down syndrome:
- What is life actually like for parents who have sons and daughters with DS?
- How many of them love their son or daughter with DS?
- How many of them regret having their child?
The researchers heard from heard from 2,044 parents of children with Down syndrome:
99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.
They surveyed 822 siblings of people with Down Syndrome::
More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.
Perhaps most importantly, they heard from 268 people with Down Syndrome, aged 12 or over:
[N]early 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life.
Longtime readers of Contrarian have encountered Josh and Jacob before, celebrating Canada Day with their rousing rendition of O Canaduck!, and on a fleeting moment when they were definitely not happy with their lives.
The experience of actual parents with actual Down syndrome is the best answer for those who say, “I could never do that.” They might not choose it, but when responsibility for someone with Down syndrome falls upon them, most people rise briskly to the occasion, and look back at the experience as positive and rewarding.
H/T: JP
Bomber LeBlanc’s last act of defiance
Mary Cecilia “Bomber” LeBlanc, shown above with L’Arche assistant Mavis Mungai of Kenya at the 2007 Cape Breton Island Film Series party for l’Arche Cape Breton, died peacefully Thursday morning in her home at The Vineyard, a L’Arche residence in Orangedale, surrounded by friends and caregivers.
Death came six days before her 60th birthday, and, incredibly, hours before a provincial health bureaucrats were to meet to begin planning her involuntary removal from l’Arche, over protests of family, friends, and caregivers.
Mary was a small woman with a steely will and an outsized capacity for getting her own way—and then leading a chorus of laughter about the outcome. Deaf from birth and without speech, she was orphaned at age three and spent 30 years in institutional care before finding a new life at l’Arche, where she lived for the last 27 years.
In her eulogy at Sunday’s funeral, l’Arche Community Leader Jenn Power* described Mary as “a silent woman who spoke volumes.”
[C]learly, somewhere along the line, she made a decision: that she would not let the circumstances of her life define or limit her; that she would stand up to those who tried to keep her down and say, albeit without words, “You’re not the boss of me.” In the disability world today, there is so much emphasis on self-advocacy. Truly, Bomber was a self-advocate before her time….
Mary’s death was her final act of defiance. For some months now, we have been in discussions with the Department of Community Services about whether Mary’s needs would be better met in a nursing home. Her family and her community were strong advocates for supporting Mary in her home at The Vineyard. And yet, the process was moving forward. On Thursday, November 4th, Mary’s case was being heard, and it seemed obvious that she would be placed on a waiting list for nursing home care. Instead, on Thursday, Mary died — the first thing in her life she ever did in a hurry. A pretty powerful act of self-determination.
To the officials involved, this is, I am sure, a complex issue, replete with rules, protocols, standards, evaluations, criteria, and, no doubt, budgetary considerations. Yet the meeting that would decide Mary’s fate allowed for no participation by her family, her guardian, her community, or her friends—let alone by Mary herself.
Here is an issue where Health Minister Maureen MacDonald could show leadership by deliberating on some fundamental questions: Must every death be medicalized? Do Nova Scotians have the right to choose to die at home among those who love and care for them—even, and perhaps especially, Nova Scotians with disabilities?
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* Disclosure: As regular readers know, Jenn Power is my daughter-in-law; my son Silas, Jenn’s husband, also works at l’Arche Cape Breton.
Viral loneliness – update
Tanya Davis
Sandbar Music of Charlottetown, PEI, has released a soundtrack MP3 of the hit YouTube video, How To Be Alone.
Tanya Davis wrote and performed the poetry and music at the heart of the piece; Andrea Dorfman directed the film, which had been viewed just over 600 times when featured here July 30. (Find a partial account of its viral progress toward the current 1.4 million hits here.)
It’s plain that, aside from one crankypants Globe and Mail reviewer, lots of people want to hear music and poetry like Davis’s, and see moving pictures like Dorfman’s. The traditional distribution paradigm had little use for such artists, but in the Internet age, they — and we — have a chance to encounter one another. Once we were lonely, but now we have the long tail.
Sandbar Music, “the little music company that could,” is an interesting outfit that’s trying to nudge that process along, giving artists like Davis a way to —forgive the phrase — monetize their work.
Andrea Dorfman
You can download the How To Be Alone MP3 for just 99¢, and I urge you to do so. As Davis points out, “That’s less than a dollar.”
If you’re near Sydney on November 4, you can view the video on the big screen at the annual Cape Breton Island Film Series benefit for L’Arche Cape Breton. I urge you to do that, too. It will show with the feature film Babies, followed by a musical party and Lebanese buffet. We hope Dorfman and perhaps even Davis will be on hand.
You can sample and buy lots of several indie artists’ music on the Sandbar site, including a newly completed album by Davis.
The Old Hen – a moral authority and a role model
Christian Lüdde of Germany, who worked as an assistant at L’Arche Cape Breton in 2002 and 2003, writes:
I… was fortunate to live [in Janet Moore's residence].
I very much appreciate the way Jenn kept us informed on Janet’s state and I also appreciate the very appropriate words you found to briefly describe Janet’s impact. You are right, it is hard to overstate her impact on L’Arche Cape Breton and many individuals like me. Janet was nothing short of a moral authority for me, a role model that I slowly learned to accept. So I thank you for your article and try to think that remembering somebody like Janet makes me sad, but really should make me smile and feel warm in my heart. Because this is her legacy.Jenn Power and Janet Moore
The Old Hen
Janet Evaline Moore, founder of L’Arche Cape Breton, died peacefully last night at her home in Orangedale, two days before her 63rd birthday.
Tom and Ann Gunn and Janet Moore
Tom and Ann Gunn invited Janet to live with their family in 1983, marking the start of an intentional community that is now home to some 25 Core Members and a varied group of assistants from Cape Breton and around the world.
Janet Moore was a gentle, funny, loving woman, with an out-sized capacity to move and inspire people around her. She and her long-time friends, Cathy Brady and Mary LeBlanc, the Old Hens, enlivened events at L’Arche with a running commentary from the sidelines — a cross between a comical Greek chorus and a kinder, gentler version of the Muppets’ Statler and Waldorf.
Janet adored the Cape Breton singer Rita MacNeil, who graciously hosted a 60th birthday party for her at Rita’s Tea Room in 2007.
Cathy Brady, Rita MacNeil, and Janet Moore
Over the last two years, Janet underwent the steep decline that often overtakes people with Down Syndrome in their 50s and 60s. She spent her last days at The Vinyard, a L’Arche residence in Orangedale, surrounded by friends who stroked her hair, held her hands, and sang quietly to her.
“Our community is making a significant passage as we say goodbye to Janet,” Community Leader Jenn Power wrote in an email to L’Arche friends early this morning. “We know life will feel different now, but we know just as surely that Janet’s faithfulness to the mission of L’Arche will continue to be our example.”
Mary LeBlanc and Janet Moore
It is difficult to overstate the impact Janet had on everyone at L’Arche, or the sadness that will be felt there, and among the far flung diaspora of former L’Arche assistants around the world.
The wake will take place from 10:00 am to 9:00 pm on Janet’s birthday, Saturday, at The Vineyard in Orangedale. The funeral will be at 2 p.m., Sunday, in the L’Arche Chapel at Iron Mines, with a reception to follow in Orangedale.
In Sydney this Saturday
If you are in or near Sydney this Saturday, here’s an event to enjoy:
The L’Arche Cape Breton Springfest show, an annual tradition in Judique, expands this year to Sydney. The program features two short videos produced at the community, a short play featuring L’Arche core members and assistants, and a selection of desserts from the Cocoa Pod—all for $15. There’s also an auction with Leo Cox of Mabou swinging the gavel.
NY Times picks up our Down syndrome thread
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 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?”
The Times quoted at length from Jenn’s subsequent, more detailed Contrarian post, and from Stanford University researcher Dr. Ahmad Salehi’s thoughtful response here as well. Motherlode’s thread on the subject has now attracted more than 100 comments. Several are thoughtful and constructive, but a shocking number come from people quick to condemn Jenn as “selfish” or “patronizing” for not jumping at the chance to chemically enhance her sons’ cognitive skills.
Many Contrarian readers are familiar enough with Jenn to know her life is the antithesis of selfishness. As I wrote in my own comment on Motherlode:
As the leader of this extraordinary [L'Arche] community, Jenn manages an incredible range of human emotions, trials, joys, and tribulations, along with the myriad practical details required to manage any large group of diverse people. She does this with enormous tact, kindness, generosity, wisdom, humor, firmness, practicality, and love. And immense hard work.
From this I conclude that, despite decades of progress integrating developmentally challenged citizens into society, we have a long way to go in overcoming the kneejerk tendency to view people like my grandsons as less good and less valuable than the rest of us. That’s our loss as much as it is theirs.
In a separate post aimed at New York Times readers, I will include links to all our Down syndrome posts, and to several short videos featuring the extraordinary folks at L’Arche Cape Breton, including my esteemed two grandsons, Josh and Jacob.
An infelicitous phrase – updated
The Harper Government’s ambivalent attitude toward immigration deserves more thoughtful consideration than I have time for this morning, but in light of yesterday’s release of a new guide for prospective Canadian Immigrants, a manual high in testosterone and shy on environmental values, I flag it here for future discussion.
An immigrant himself, Contrarian left yesterday’s Film Series benefit for L’Arche Cape Breton* thinking about the Senegalese immigrant cab driver at the centre of the featured movie — an ebullient character named Solo, brilliantly played by Souleymane Sy Savane, himself an immigrant to the US from the Ivory Coast. Solo is one of those characters you instinctively root for, a guy who makes you proud to live in a country that welcomes immigrants of all stripes.
As I left the theatre with these thoughts running through my head, I flipped on the radio to hear Immigration Minister Jason Kenney hectoring would-be immigrants about their responsibilities:
When you become a citizen, you’re not just getting a travel document into Hotel Canada. You are inheriting a set of responsibilities, of obligations as a citizen.
A travel document into Hotel Canada. Perhaps it was merely an off-note in an otherwise skillful presentation, but the minister’s infelicitous phrase was striking for its portrayal of the immigrant as other, while its vehemence conveyed deep conviction. Comments welcome.
[Updated] Dennis Falvy demurs:
If the concept of ‘other’ is bothersome, how does one approach the definition of being Canadian? Unless ‘Canadian’ means ‘citizen of the world’, there will have to be a distinction between being a Canadian, and not being a Canadian, a distinction that leads ineluctably to being the one or the ‘other’.
And even if one favours the concept of being a citizen of the world, the seats of power, and sources of human abuse, in the world do not accept this idea yet, and there is no apparatus to support or enforce it. I for one would prefer that my citizenship distinguished me from some of the rest of the world, and being Canadian works just fine (at least until Stephen Harper succeeds in bamboozling voters into allowing him to destroy the country).
As for testosterone playing a large part in the new citizenship manual, I presume you are referring to the part played by the military in Canadian history. The thousands of women who have served and sacrificed for Canada, especially those now serving, would no doubt find fault with your choice of words, particularly this close to Remembrance Day. Now that was an infelicitous phrase.
Miles Tompkins draws a connection between Kenney’s musings and his government’s treatment of Maher Arar:
“When you become a citizen, you’re not just getting a travel document into Hotel Canada. You are inheriting a set of responsibilities, of obligations as a citizen.” Yes, and when you are a Minister of the Crown, you also have a set of responsibilities under international treaties which are the law of the land. There is a bit of an obligation there.
(*) Ironically, L’Arche Cape Breton relies heavily on temporary foreign workers, young people who spend a year or two in the community before returning to their native lands. Their work features long hours, few days off, intense personal care of men and women with significant developmental disabilities, and the extraordinary personal growth that comes from that experience in the L’Arche context. In some cases, the work these young people do fulfills the national service obligations of their home country.
O what a party!
At Sydney’s Waterfront Pavillion Thursday night, it’s The Party Of The Year — and that’s saying something in Cape Breton!
The Cape Breton Island Film Series‘ 4th annual benefit for L’Arche Cape Breton gets under way at 7 pm at the Empire Theatre with the acclaimed indie film GOODBYE SOLO, the story of two men from completely different backgrounds who form an unlikely friendship.
At 9, the action shifts to the Joan Harriss Cruise Pavillion, next to the Big Fiddle, for live music and dancing to the Blues Merchants and Cape Breton’s best Lebanese buffet. The whole L’Arche Community will be there, and they love to party. So it’s a chance to meet a remarkable group of men and women.
Tickets, available at the door, are $10 for the film; $20 for the party; or just $25 for both. Every dollar goes to L’Arche, thanks to the generosity of AECOM, AMEC, CBCL, City Printers, Conestoga Rovers, Empire Theatre, Framework Cycle and Fitness, Ramsay’s Honda, Sampson MacDougall, Schwartz and Co., Seaside Wireless, Sydney Credit Union, Unsworth Kachafanas, VMP Group.
