Executive Director at Civil Rights Now! in B.C. Hope is not a plan.
“Civil Rights Now! is an all-volunteer, non-partisan, not-for-profit organization registered under the BC Societies Act.
Its goal is to get statutes passed by the provincial legislature which will ensure persons with disablilities living in British Columbia receive equal benefit and protection of the law. Ones that give practical force and effect to the section 15 equality provisions of the Canadian Charter of Rights and Freedoms.”
Board of Directors:
Paul Caune is a disability advocate, writer and film maker. In addition to being the Executive Director of CRN, Paul writes a column for the Beacon News. In 2013 he released the documentary film Hope Is Not A Plan.
Paul Caune is the Executive Director of Civil Rights Now!
Jean is the mother of two, who since her youngest son was diagnosed with autism in 1996 became the co-founder and leading spokesperson for FEAT of BC (Families for Early Autism Treatment http://www.featbc.org/) an organization dedicated to obtaining science-based autism treatment within Canada’s healthcare system.
Jean was the co-chair of the litigation steering committee forAuton, a Canadian landmark Charter disability case.
She performed the same role in Hewko, litigation aimed at ensuring children with autism gain equal access to BC’s education system. In 2008, Jean co-founded Medicare for Autism Now http://medicareforautismnow.org/, a non-partisan, national advocacy group focused on creating political will in support of necessary public policy change.
Since 1972, he has performed leading roles in over a dozen political campaigns in BC or Ontario. In 2005, David designed a national political strategy for FEAT of BC and is a co-founder of Medicare for Autism Now.
Due to personal struggles advocating for her daughter, Jeanette gained extensive knowledge and expertise navigating the complex maze of disability supports and services.
For 5 years Jeanette has been working independently as a community navigator for seniors and people with disabilities, promoting individualized funding which enables choice, control and dignity of their own lives.
Caune’s cause: Rights for people with disabilities
By Susan Lazaruk, The Province
Paul Caune, 2014 recipient of The Courage To Come Back award in the medical category, at his home in Vancouver.
Photograph by: Arlen Redekop , PNG
This is the third of six profiles on recipients of the 2014 Courage To Come Back Awards, presented by Coast Mental Health to six outstanding people who have overcome great obstacles only to give back to their communities. Their inspiring comebacks will be celebrated at a gala dinner at the Vancouver Trade and Convention Centre on May 8.
Paul Caune’s activism for the rights of people with disabilities began in 2005 and involved the police, but at the time they weren’t, as you might think, on his side.
Caune — who was born with muscular dystrophy, uses a wheelchair and breathing tube and has limited use of his limbs — launched a decade of fighting for the rights of the disabled when he refused a transfer to a nursing home at age 37.
He rejected medical authorities’ insistence he live in what he called “essentially a medical prison” where you’re “just a piece of meat,” and he was appalled that he didn’t have the right to choose where he lived.
It’s a visceral reaction that has driven his lobbying efforts to change the rights of people with disabilities in B.C. and has earned him the 2014 Courage To Come Back award in the medical category.
Caune, who was adopted by an immigrant couple after he was given up by his parents at birth and has been nearly blind in one eye since childhood, had broken limbs and had surgery as a teen, and had also suffered through three years of depression from 2001 to 2004.
In 2005, as his progressive disease got worse, Caune spent nine months in intensive care at Lions Gate Hospital after a dangerous buildup of carbon dioxide in his body and a tracheotomy.
He had been living in a group home for those with disabilities, but when it was time to leave hospital, he was told he couldn’t return.
Health authorities arranged for Caune to be transferred to George Pearson Centre, a home run by Vancouver Coastal Health for those with severe disabilities.
“I told them ‘I don’t consent to being in a care home, and I was told I don’t have the right not to consent,” he says.
Police were called to his hospital room and RCMP officers threatened to charge him and health authorities vowed to get a court order to have him physically removed.
After more than two years at George Pearson, Caune continued to fight for his rights and was eventually able to live independently with medical care.
Caune, now 46, lives alone in a Vancouver Resource Society apartment in Vancouver near Burnaby’s Central Park. The modern fourth floor suite is bright and airy and has wider wheelchair-friendly doorways, a door that opens and closes remotely and other accessibility features.
The apartment is also his base as executive director of Civil Rights Now! and his work with other groups, and from where he lobbies to increase affordable accessible housing for people with disabilities.
“We’re not people with disabilities,” Caune corrects a visitor. “I prefer voter. I’m a voter. Period.”
It’s one of several pithy phrases Caune injects into an interview.
On the reason his group — which is non-partisan, non-profit and run by volunteers — doesn’t accept government funding: “It’s a golden chain around your neck that they can pull whenever they want.”
On politicians who he says pay lip service to rights for disabled voters: “They like to take their picture with cancer.”
The title of his 2013 documentary on his civil rights fight: “Hope is not a Plan.”
On his reaction to injustices: “If your civil rights are violated, you don’t need a good hug, you need a good lawyer.”
Caune doesn’t advocate directly for individuals with disabilities, but wants to work with whichever provincial government is in power to enact a law so civil suits can be brought on behalf of people against offending parties, such as care homes, as they can in the U.S.
He says a new law would benefit the baby-boomer demographic as they age and are expected to fill long-term care homes.
Those who know him are impressed by his tenacity.
“(Paul’s) determination, advocacy and optimism are an inspiration to me and so many others,” said Ken Fraser, executive director of the Vancouver Resource Society, in his nomination letter.
Fraser said he was impressed by Caune’s “courage, bravery and determination (to) not let his disability be a barrier in his life.”
David O. Marley, who wrote a letter to support Caune’s nomination, said that in a long career as a trial lawyer he has never seen anyone “display Paul’s singular tenacity and complete absence of self-pity … in search of legal protections for disabled individuals.”
“He has become a voice for the least visible group in our society — people who have been institutionalized — and he has taken considerable personal risk to tell his own story and their stories,” said Christine Gordon of the B.C. Coalition of People with Disabilities.
If he had to do it all over again, knowing what he knows now, Caune said he would have become a lawyer at 19 and maybe pursued a political career.
But life expectancy for those with MD is in their 50s, he said.
“I came to this too late in life,” he says. “But to get my good idea elected, then I’ve done my duty as a citizen.”
Karin McCulloch Wow ! Kudos to you Paul !
Leonard Biblitz A pal of mine with advancing MD recently went five long weeks without a shower b/c provincial home care services authorities wouldn’t OK it.
Can you imagine? Some of the workers who attend decline to hoist water in the kettle so he can make himself a cup of coffee.
‘Not in my job description,’ is the familiar riposte. Very, very troubling.
Karin McCulloch This is far beyond disturbing ! We, seen to have lost our way and simply become robots that we can’t do anything for humans unless someone tells us what to do.
The only other comment I have for those people, they may be walking in Paul’s shoes ( and others ) sometime in the future !
- The Community Care (Direct Payments) Act
- The Civil Rights of Persons in Community Care Act
Biblitz B.C. Law Review
Below are links to stories and events about Civil rights for the disbaled activist Paul Caune
Paul Caune, co-founder and executive director of Civil Rights Now! is awarded the Courage To Come Back Award.
Click on the link
http://www.theprovince.com/health/Caune+cause+Rights+people+with+disabilities/9729801/story.html for story
In recognition of “World Autism Awareness” Day, Jean Lewis along with Medicare for Autism Now co-founder, David Marley were interviewed by Jill Krop of Global TV on April 2nd 2014
Please read & forward to your network CRN Executive Director Paul Caune’s latest Beacon News Op-Ed:
Please read & forward to your networks this Beacon News column by CRN Executive Director Paul Caune: http://beaconnews.ca/blog/2013/10/bc-needs-a-civil-rights-of-persons-in-community-care-act/
Civil Rights Now! say if you think the Telford case is just bad luck you should Think Twice! Please read and share
Courage To Come Back: Medical winner fights for civil rights of disabled
Paul Caune is the founder of ‘Civil Rights Now’ and ‘Think Twice’
John Ackermann April 14, 2014
VANCOUVER (NEWS1130) – A lifelong battle with Muscular Dystrophy has kept him in a wheelchair since his 20s, but nothing can stop Paul Caune from fighting for the rights of others with disabilities.
News1130′s series of Courage To Come Back profiles continues with a look at the winner in the medical category.
“I’m not an activist, I’m a citizen, and I’m a voter,” explains Caune. “I try not to use the phrase ‘people with disabilities.’ I’m a voter. Period.”
As a voter, he is fully up on the rights people like him are entitled to because he was forced to learn them the hard way.
“My disability got worse as I got older and through a series of unfortunate events, I got sucked into the bad parts of publicly-funded services for people with disabilities,” he recalls.
“I learned the hard way that I had been neglecting my duties as a citizen. It is my country, my society, my health care system; it’s my social services system and the reasonable expectations of citizens are not being met.”
Born and raised in North Vancouver, the 45-year-old has had to fight for his right to live independently.
At one point, the Vancouver Coastal health authority called the RCMP on him when he refused to move to a nursing home, what he called a transparent attempt to scare him.
Those events were later chronicled in “Hope Is Not a Plan,” a documentary he co-produced in 2013.
“I said to myself, ‘If I ever get out of here, I have to do something about this, the way people with disabilities are treated.’”
That’s why Caune founded “Civil Rights Now,” a group dedicated to lobbying government to improve the rights of those who can’t always speak for themselves.
“There are 750,000 people with disabilities in BC, not all but many of whom are not reaping the benefits of the success of Canadian society,” he points out.
And as our province’s population continues to age, he expects the issue to come further into the forefront.
“They can live in denial all they want, but many seniors become people with disabilities and if you think your civil rights are going to be protected, think twice.”
Caune’s “Think Twice” http://civilrightsnow.ca/think-twice/ campaign encourages a growing number of disabled British Columbians to know what they’re entitled to under the law.
“You don’t need to ask anybody’s permission to have civil rights. You have them. You have to use them. It’s like a muscle: use it or lose it.”
News1130 is a proud sponsor of the Courage To Come Back Awards, which will be handed out May 8th at the Vancouver Convention Centre.