Tagged: L’Arche Cape Breton
For most of 2012, Mary MacDougall was acting community leader at l’Arche Cape Breton. That year, her birthday fell on a Tuesday, the night the whole community gathers to share supper, news, and conversation. That’s when Mary received an unexpected birthday gift from a man who has never spoken a word in his life.
Then there was the time L’Arche Core Member David Gunn decided to ham it up at a gathering where EMT’s were present, inspiring a bigger reaction than he bargained for.
You can subscribe to l’Arche Cape Breton’s YouTube channel, and follow l’Arche Cape Breton on Facebook, Twitter, and Instagram. You can also make a tax-deductible donation to l’Arche Cape Breton (a registered charity) by sending a cheque payable to The Ark Community Initiatives Society, 3 l’Arche Lane, Whycocomagh NS B0E-3M0.
Huffington Post’s Canadian edition yesterday published an investigative report by a team of student journalists from the University of King’s College detailing the housing crisis facing Nova Scotians with intelectual disabilities.
There is not enough room in the system for all of the people who need a place to live. They languish on waiting lists that are hundreds of names long. Their families, in turn, must support them with scant financial, caregiving or community programming resources. Eventually the families get too old or sick to do it, making the situation for their relatives in rehab even worse.
With so little room, placements are driven by crises. These crises, in turn, lead to inappropriate placements that only exacerbate individuals’ disabilities and sometimes cause mental health issues.
It is a bureaucratic system driven by policies, not people’s needs. And in the instances where policy would help to improve lives – in properly licensing, regulating, staffing and overseeing housing options – the system falls short.
Successive provincial governments have known all about this crisis and have repeatedly promised to fix it. The current NDP government is no exception.
After years of inaction, the Department of Community Services (DCS) recently produced a report — more accurately a discussion paper — about options for dealing with the crisis. The new document repeats sweeping promises of change, but DCS continues to ignore the findings of a 2001 report it commissioned that could have served as a basis for action 12 years ago.
“The Kendrick report is now over 10 years old and basically the fundamentals of the Kendrick report are no different now than … 10 years ago,” Dr. Brian Hennen, a past president of the College of Family Physicians of Canada, told the student journalists.
Jenn Power, Atlantic Regional Co-ordinator for l’Arche Cape Breton [and—disclosure—my daughter-in-law] summed up the crisis on her Possibilities blog.
[T]he primary struggles of the individuals profiled in the piece are not their disabilities per se, nor the way those disabilities might affect their mobility, learning skills, or emotional health. Instead, the suffering they endure arises from the way the provincial “support” system treats them as a result of their disabilities. They are reduced to their diagnoses, their difficult behaviours, their classification level. They languish on endless waiting lists with no idea of the future, then are hurried into last-minute crisis placements at warehousing facilities. They are forced to fit into an existing (outdated) system; the system is not expected to change to fit the needs of individuals.
This is not news to any of us who have friends or family members with intellectual disabilities, or who have been involved in this field for any length of time. Our people are overlooked, patronized, ignored, devalued, and abused. Their voices are not heard. But boy, do they have something to say.
At Nova Scotia’s l’Arche communities, and many other DCS-funded homes, bureaucratic rules often deepen the impact of disabilities, rather than lighten them. Here’s one of several examples Power cites:
Lindsay and Tanya, both of whom graduated from high school and hold down full time jobs, would say that they deserve the right to stay home alone and watch TV or read a book or relax on the couch for a couple of hours every now and then. But because they live in a provincially funded group home, they are denied this dignity of risk and are forced to join whenever their housemates leave the house.
Of the ways Darrell Dexter’s government failed to achieve its supporters’ aspirations, none is more disheartening than its failure to bring order, purpose, and humanity to the Department of Community Services. Will the next government do any better?
Consider taking in the annual l’Arche Cape Breton Springfest at the World Trade and Convention Center, Membertou. It’s an evening of stories and songs by the l’Arche troupe, together with delicious desserts and an auction featuring arts and crafts by l’Arche folks, and goods donated by l’Arche supporters.
L’Arche Cape Breton will share their gift of music and storytelling, while illustrating their incredible zest for life.
If you aren’t familiar with l’Arche, here’s a wee introduction:
Director and videographer: Naomi Cousins; Producer: Mary MacDougall; Artist: Anil Kumar; Musical score: Pius MacIsaac; Cast: Members of l’Arche Cape Breton.
The late Janet Moore, the founder of l’Arche Cape Breton who was profiled here on her death in 2010, was a huge fan of Rita MacNeil. Janet’s friend Mary MacDougall arranged for the two to meet at Rita’s Tea Room on her 60th birthday, in 2007.
Jenn Power, Atlantic Regional Co-ordinator for l’Arche (and my daughter-in-law) described the event on her blog.
Those of us who love Janet were more than a little apprehensive as we prepared for the celebration. Janet is getting old, and showing her age. As with so many people with Down Syndrome, dementia is slowly creeping in and stealing Janet’s peace, her humour, her independence, her ability to enjoy life. Intense emotion can overwhelm her, and this day would surely be filled with that. Having to keep to a rigid schedule, once something she demanded and loved, can now leave her in tears. So we crossed our fingers, surrounded Janet with people she knows and who know her, and off we went.
The brilliant sun over the blue waters of the Bras d’Or as we drove through Eskasoni and East Bay seemed to be a good omen. We arrived at the Tearoom in good spirits, having sung along with Rita on the CD player the whole drive down. With a friend on each arm, Janet plodded up the ramp into the Tearoom….
Before long, Janet caught sight of Rita. She squinted up her eyes, as she often does to help her focus, and tilted her head slightly to one side as she worked to connect what she must have imagined was a mirage with what evidently was becoming a reality. As everything clicked into place, she quietly, and with a sense of disbelief and wonder, exclaimed, “Rita!” In a manner fitting her age and the occasion, Janet slowly walked toward her idol, looked closely into Rita’s face to make sure she wasn’t dreaming, then gently wrapped her arms around Rita’s shoulders, placed her head on Rita’s chest, and smiled. This smile did not dim or fade once during the two hours we spent with Rita at lunch!
The lunch was lovely. Rita was an absolute gem, making small talk with our strange crew of friends. She had no trouble joining in Janet’s typical teasing – “chicken legs”, “old hen”, “you’re cracking up.” Although Janet simply would not stand for anyone to call Rita an old hen!
Several times during lunch, Janet would gaze at the photo of Rita on the CD she clutched in her hand (a CD, incidentally, that Rita had given her, signed, as a birthday gift) and then look up at Rita, in the flesh, sitting right next to her at the table. This seemed to be a wonder that Janet could barely comprehend. And then she would tune into the music coming over the speakers, which was (of course) Rita MacNeil. She would look up at the speakers, at her CD, then again toward her host, in absolute amazement. This woman was even more incredible that Janet had imagined!
After a delicious lunch, and what seemed like endless hugs, we prepared to leave. I linked Janet over to the guest book, where her shaking hand and deteriorating vision made it virtually impossible for her to write much. But she did her best, telling me she had written her name and “I love you, Rita.” And on that note, we left to drive home.
I believe that we discover what is holy, sacred, mysterious, through our relationships with others, and those few hours with Janet were filled with holiness and mystery – and not just the mystery of how Rita could be sitting at our table and singing on the PA at the same time! But that visit to the Tearoom with Janet brought me back to what is means to live a life of gratitude, to be present to each moment, to embrace my own vulnerability and allow it to bring me closer to others instead of isolate me from them.
Incidentally, Rita, unbidden, picked up the tab for Janet and the 10 l’Arche friends she brought along for the birthday celebration. Quite a lady.
Shortly before Christmas, a company I work with sent out a message to its customers advising them of shorter holiday hours for telephone customer service and technical support. Imbued with the spirit of Jesus, a customer in Cumberland County saw fit to reply:
I am sure that your boss has ordered compliance with the goddam politically correct and inoffensive crowd that is prevalent these days, but it is Merry Christmas or Happy Christmas in your correspondence with me, otherwise don’t bother.
I once threatened that the next person that bowed and cowered to the middle East and Asian immigrants’ demands, and wished me a “Happy Holiday,” I would punch him/her in the face.
I don’t care what church you go to or what you believe, this is Canada, and in Canada, we celebrate Christmas. Those who are offended by that should reconsider their decision to come here and retrace their steps to whatever pathetic swamp they came from. I have no love, and little caring, for those who would come to my country and change everything that I spent forty years in uniform to protect.
Having grown up in the United States, I’m accustomed to having one’s countrymen make you feel embarrassed for your country, but it doesn’t happen often in Canada. This gent managed to pull it off.
Now consider the pre-Christmas experience of three young Germans spending the year in Cape Breton, where they serve as live-in assistants to men and women with developmental disabilities at l’Arche. Finding themselves with four days off from their intense duties, the adventuresome trio made a quick trip to Newfoundland, where they booked rooms at Sheppard’s B&B in Gros Morne National Park.
Ka Klicker, who called for the reservation, noted that proprietor Doris Shepphard, “seems to be very nice.”
The night of their arrival in Trout River happened to coincide with the annual Christmas party Doris hosts for her church group. Nothing would do but that the Germans join the party. And to their astonishment, when they got to the celebration, each was presented with a personalized Christmas card and a small gift.
“It was unbelievable,” said Klicker, who had already told me, a few weeks earlier, that the warmth of the welcome she received in Cape Breton was the thing she found most surprising about Canada. Now Western Newfoundland trumped even this standard of hospitality.
“Everyone in Newfoundland was just so friendly, so welcoming, so kind,” she said, shaking her head in amazement. “This would not happen in Germany. Germans are friendly, but not like this.”
To resurrect a shopworn phrase, my Canada includes Sheppard’s B&B. And reduced holiday hours.
Joan MacDonald (in red pajamas at left) starred as an increasingly cranky Bethlehem innkeeper deprived of sleep by the continuous nocturnal arrival of pregnant guests, angels, shepherds, kings, and ultimately a baby in l’Arche Cape Breton’s annual Christmas pageant, this year titled, “One Night at the Inn.” The musical troop played to an appreciative crowd at the Strait Area Education and Recreation Centre in Port Hawkesbury Sunday afternoon. Coralee MacDougall (seated, centre) played Mary.
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.
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.
Mary Cecilia “Bomber” LeBlanc, shown above with L’Arche assistant Mavis 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?
* 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.