July 8, 2011
Paul Caune, Executive Director, Civil Rights Now!
In his delightful book Bad Medicine: Doctors Doing Harm Since Hippocrates David Wotton demonstrated that for 2,000 years doctors trained in a tradition starting in Ancient Greece not only caused more harm than good to their patients, but seemed unaware that they were doing more harm than good. For 2,000 years the only therapy Western doctors gave patients was to bleed them or give them drugs that made them puke or gave them diarrhea. It was only with the discovery of the infection process and the wide-spread acceptance of this discovery by Western doctors early in the twentieth century that doctors starting saving more lives then ending them. This, in combination with the wide-spread distribution by the welfare state of vaccination, clean water, sanitation, and better housing effectively ended in the developed world diseases that killed 30 to 50% of all humans before the age of six, or disabled untold millions of them, since time immemorial.
Do you know anybody in your immediate family who is a leper? Who has died of small pox? Who has died of the bubonic plague or of cholera? Do you even know what those diseases are? A large proportion of you would not be alive today to get a university education without this genuine progress. But this is an accomplishment achieved only within the last eighty years.
This means there was a decline over the last eighty years of the proportion of BC’s population who had physical and/or mental disabilities which made them incapable in the short or long term to either meet their own physical needs or to earn enough money in BC’s economy to buy the services they needed to survive.
But now, due to the progress I just described, a larger proportion of British Columbians are living longer than ever before, so the proportion of people with disabilities will increase over the next forty years.
Therefore almost every reading this is directly related to someone who is or will be a person with a disability; and almost everyone in this room will be a person with a disability for a part of your life.
According to the World Health Organization and World Bank 2011 World Report on Disability (p29), of the 6.9 billion people on earth, approximately 785 million (15.6 percent) to 975 million (19.4 percent) of them aged 15 or older are living with a disability.
670,000 of the millions of people with disabilities on this planet live in British Columbia, a province of 4,510,585 in the vast Northern country of Canada.
This means approximately 15% of British Columbians have a disability. This percentage will grow over the next forty years. People with disabilities and their immediate family and friends are hardly a special interest group or a tiny minority.
How has BC treated people with disabilities since it joined Confederation in 1871? This may indicate how the government of British Columbia will support voters and children with disabilities and their families during the next forty years.
Starting in the 1870s the government of British Columbia decided there was one solution to the problem of citizens with disabilities who came to its attention.
How were the rest of the citizenry to be protected from what at the time were called lunatics? And how were these lunatics to be protected from themselves?
The BC government decided: We will feed, cloth and shelter these people in prisons, make those who can do physical farm labour work for us for free, prevent some of them from being physically capable from having children and separate them from their families.
Starting in 1878 in New Westminster with the Provincial Asylum for the Criminally Insane, later known as Woodlands, and spreading up the valley and into the Interior, the government of BC built what was in effect a prison system for children and adults with Cerebral Palsy, Down’s Syndrome, Autism, polio, mental illnesses, deafness, hare-lips and blindness. The medical profession encouraged families to put their sons, daughters, brothers, sisters, mothers, fathers, husbands and wives with physical and/or mental impairments into these prisons, supposedly in the best interest of all concerned.
What was the quality of life in these prisons for what were officially known until the 1950s as “inmates”?
According to William Vander Zalm, Minister of Human Resources, in the introduction to Woodlands: A Century of Progress by Val Adolph, published by the BC Ministry of Human Resources in March 1978:
“On occasion when one reads history, the impression can very often be that things don’t really change very much. I think anyone reading this history of Woodlands School will come away with an entirely different impression indeed. As I leafed through this booklet, I was jointly taken with two sensations: the first, sadness at how in our ignorance we have treated and sometimes mistreated the handicapped and retarded, and second, satisfaction with the knowledge that we have moved toward more humane and informed programs.”
According to Grace McCarthy, Minister of Human Resources, on July 19, 1979 (Hansard p895) in the Legislative Assembly of BC:
“You make light of the commitment that this side of the House, or any member of this House, has to the retarded children in this province. Let me say once again that we have the best program and services for retarded children anywhere in Canada. There isn’t any place that gives better.”
In the introduction of In the Context of its Times: A history of Woodlands by Val Adolph, published by the BC Ministry of Social Services in 1996, Theresa Kerin, Assistant Deputy Minister, Community Support Services, Ministry of Social Services stated: “It has been said that a society is judged by how it treats its most vulnerable citizens. If that is true, British Columbia must be very high on the list of civilized societies.”
Very little in the three statements I’ve just quoted is true, as I will now prove:
”Details of physical abuse found in the records include hitting, kicking, smacking, slapping, striking, restraining, isolating, grabbing by the hair or limbs, dragging, pushing onto a table, kicking and shoving, very cold showers and very hot baths resulting in burns to the skin, verbal abuse including swearing, bullying and belittling, inappropriate conduct such as extended isolation, wearing shackles and wearing a belt leash with documented evidence of the injuries including bruises, scratches, broken limbs, black eyes and swollen face…the sexual abuse included assault, intercourse and in the result, injuries and in a few cases, a pregnancy.”
This is according to The Need To Know: Administrative Review of Woodlands School published in August 2001. It is based on an analysis of incidents described in Woodlands documents from 1975 to 1992.
”Stories that were told by the former residents told of physical abuse such as being slapped or beaten, sexual abuse by staff or other residents, having to work on the wards or for other businesses, being confined in side rooms or being placed in restraints or losing their privileges. Residents talked of being afraid to speak up for fear they would be punished. They also spoke of the fear of watching or hearing another resident being abused…Some of the residents described how scary it was to live on a ward where they felt the other residents were dangerous.”
This is according to The Woodlands Project: A Report of the Public Guardian and Trustee of BC (p20) published in August 2004. This report is based on a review of 100,000 pages of Woodlands documents and 127 interviews with former Woodlands residents describing the 1975 to 1992 period.
This means civil servants for decades encouraged Britsh Columbian parents to put their children in a place where violence was a common occurrence. As Friedrich Nietzsche wrote: “The State is the coldest of all cold monsters.” (Thus Spoke Zarathustra, Of The New Idol, R.J. Hollingdale trans.)
But Woodlands and its brood no longer exist.
Because a group of mostly angry moms acted with clarity, focus and persistence and persuaded the very same government that was lying about the quality of life in Woodlands to close the institutions and liberate the prisoners back into the community.
In other words, the medical profession would have continued their 2000 year history of ignoring the harm they were doing, with, in this case, the connivance of duly-elected conservatives and social democrats, if it wasn’t for parents doing their duty as citizens and demanding and getting real reform.
In 2009 the BC government admitted residents at Woodlands had been abused and agreed to financially compensate some of the former residents.
Shamefully the BC government refuses to admit their was systemic abuse at Woodlands and it refuses to compensate residents who left it before 1974 (when even more abuse most likely happened, according to Dulcie McCallum, author of The Need to Know report cited above, in response to a question I asked her at the December 10, 2010 Community Legal Assistance Society Forum on the UN Convention on the Rights of Persons with Disabilities.)
But why did the BC government agree to compensate any of the former residents?
Because some of the former residents brought a law suit against the government.
In other words, the BC government doesn’t take responsibility for the harm it has caused unless it’s beaten in court or, as was most likely in the Woodlands suit, are about to get beaten in court.
But we’re getting ahead of ourselves in this narrative of how BC has treated voters and children with disabilities.
The start of the closing of the institutions and the birth of the community living movement takes us to the late-1970s.
In 1980 an amazing event happened. A young man named Terry Fox from Coquitlam British Columbia, who had lost a leg to cancer, began a marathon across
Canada to raise money for a cure. As we know he didn’t complete that marathon but the global response to Terry Fox’ initiative has raised 500 million dollars since 1980.
The Marathon of Hope inspired Steve Fonyo, who had also lost a leg to cancer, to run across Canada in 1984 to raise money for a cure. Fonyo’s Journey For Lives raised 14 million dollars.
More famously, the Marathon of Hope inspired Rick Hansen from Williams Lake British Columbia, who has a spinal cord injury, to do his 1986 Man in Motion tour around the world in his wheel-chair, which lead to the creation of the Rick Hansen Foundation, “which has generated more than $200 million for spinal cord injury related programs.”
One of the effects of the drive of the community living movement and the global response to the athletic accomplishments of Fox, Fonyo and Hansen was the great improvement of the physical accessibility of streets, taxis, stores and public transportation in some parts of the lower mainland of BC. (One of the politicians responsible for this was Gordon Campbell when he was the Mayor of Vancouver.)
Since that time BC has created the Choices in Support for Independent Living (CSIL) program; reformed its so-called adult guardianship laws creating Representation agreements; after a huge lobbying effort by parts of the disability community, created in 2005 a crown corporation, which gets 700 million dollars a year, called Community Living BC, to serve the needs of people with developmental disabilities; most people with disabilities who are not working can get $700 to $900 a month from the government, with a $500 earning exemption above that; the Planned Lifetime Advocacy Network (PLAN) convinced the federal government to create the Registered Disability Saving Plan; people with disabilities have been elected to municipal and provincial government, starting with BCPA founder Doug Mowat in the early-1980s to Stephanie Cadieux in 2009, who is now the BC Minister of Labour, Citizens’ Services and Open Government.
It would appear the Dark Ages for people with disabilities are over in BC.
But as the cliché goes: appearances can be deceiving.
In September 2005 the BC government stated in its Strategic Plan Update:
“Some population groups, such as people with disabilities…face multiple barriers to improving their social and economic wellbeing. Overcoming these barriers requires focused interventions that are integrated and client-centred.”
Just two months after the BC government made this statement and pledged to create the best system of support for people with disabilities in Canada I crashed into the “multiple barriers to improving [people with disabilities’] social & economic wellbeing.”
In response the BC government, acting through its creature the Vancouver Coastal Health Authority, did a focused intervention centred on me, not to overcome the barriers, but to make them insurmountable.
The Vancouver Coastal Health Authority coerced me out of my home community into George Pearson Centre, a nursing home in Vancouver, a city that boasts that it’s the most accessible community in Canada.
In 2006, some of the Pearson staff physically abused me. I was also subjected to an abuse of power, which involved a violation of the Health Care Consent Act.
When I complained about this violation to the relevant Vancouver Coastal Health civil servant, she told me: “Even if I come to the same conclusion you have, that [so and so] violated the Health Care Consent Act—I will do nothing.” Those were her exact words: I—will—do—nothing.
Life at Pearson is best summed up in the words of an elderly woman who lived there for twenty years:
“We can’t say what really goes on here, because if we do the staff will retaliate against us.”
That elderly Canadian did receive food, shelter and personal care from her provincial government, but she could not tell the truth about her own home inside her own home. She was not living in a free and democratic society.
According to the 2008 report Envisioning Home: Participatory Action Research with George Pearson Residents by Community and Mentors Association [&] Pearson Residents Council , p12-13, based on interviews with 46 of 120 Pearson residents:
“Some residents did not feel able, physically or emotionally, to challenge staff to try and change things. They did not want to upset the status quo. …Residents also discussed their fear of negative consequences if they complained too much or made a fuss.”
Let’s see how some current residents of Pearson describe the quality of life in their home in a video posted on YouTube in April of this year here.
A little over a month ago I sent that video along with further evidence of the bullying and neglect of the residents of Pearson by its staff over the last three decades and of the degrading effect of the Pearson delivery model to the BC Ministry of Health. Here, in part, was their recent response:
“Vancouver Coastal Health Authority’s (VCHA) George Pearson Centre is a well established facility and provides high quality care to residents with complex care needs. Direct care hours given to residents are the highest in the province. Due to the large volume of residents who require highly specialized health care plans, in addition to having individual goals, wants and needs, providing individual care plans that leaves each resident completely satisfied with the outcome is a challenge. To address the concerns and goals of the residents, patient care conferences are scheduled twice yearly in the facility. Staff and management work to accommodate the wishes of all patients.”
As my own description and the other earlier ones about life at Pearson proves the quality of care and life at Pearson cannot be accurately described as “high.”
Over the last two years Civil Rights Now! has talked with hundreds of voters with disabilities and their families from across British Columbia. Fear runs like a crimson thread through all these conversations.
Voters with disabilities told us government, unions, businesses, and service providers abuse and bully them almost every day in British Columbia and they are afraid of retaliation if they speak out against the bullies.
The world they live in is not a free and democratic society.
The world the BC government has forced voters and children with disabilities into for over a century has never been a free and democratic society.
Over the last fifteen years the waiting lists for services voters and children with disabilities need to stay or get into mainstream society have grown longer and longer; more couples have divorced due to the strain the lack of services for their children has put them under; some families have left BC or the country to get services their children need; the government has degraded the BC Human Rights Commission to a tribunal and cut funding for legal aid services ; rehabilitation has declined ; hundreds of people between the ages 19 and 65 with MS, MD and brain injuries have been incarcerated in nursing homes; an unknown amount of people with mental illnesses are in the prison system; severely mentally-ill people have been de-institutionalized without proper services and abandoned to fend for themselves in the DTES at the mercy of slum-lords, drug dealers and pimps; citizens whose sole source of income is the disability cheque continue to be in a poverty trap; the BC government repeatedly turns a blind eye to bad service providers and nursing homes; the BC government has put 47% of the residents of nursing homes on anti-psychotics despite the health risk to seniors of doing so. (See sources collected here here and here. )
According to a BC government news release dated, I kid you not, April 1st 2011:
“For children [with autism] under six years of age, families receive $22,000 per year to assist with the cost of autism intervention services. For children aged six through 18, families receive funding up to $6,000 per year to assist with the cost of out-of-school intervention services.”
What the news release does not state is the reason why families with autistic children can get this money is a group of British Columbian parents, two of whom are on the Board of Directors of Civil Rights Now!, starting in the late-1990s, sued the BC government, arguing that not covering under the MSP a medically necessary treatment for their children called ABA/IBI violated the children’s civil right to equal benefit and protection from the law. These parents won two BC court decisions in favour of their children but sadly lost at the Supreme Court of Canada. This is the, in some circles, infamous Auton case. (For more on Auton go here.)
Every step of the way the BC government under both the NDP and the Liberals fought for the ‘right’ to deny a group of Canadian children a medically necessary treatment. Repeat: for the power to deny Canadian citizens, Canadian children, a medically necessary and effective treatment.
Though the parents lost their civil rights argument at the SCC the outcome of the years of litigation is the funding referred to in the just cited press release.
But what the news release does not say is this service does not meet the needs of the children and the service is eroding.
As this brief narrative has described, for most of the history of the BC provincial government, if left to its own devices, allocated resources to meet some of the needs of people with disabilities by means that stripped them of their freedom and dignity, incarcerating them in dangerous, cruel and stupid prisons, poverty traps and a swamp of programs.
This brief narrative also shows that when the families of people with disabilities and voters with disabilities act with clarity, focus and persistence, when they choose to be citizens and not victims, they have reformed BC society and put into practical effect the Canadian principle of Fairness. The parents who shut down the institutions and created the community living movement, Fox, Fonyo, Hansen, Paul Gauthier one of the creators of the CSIL program, Christine Gordon who reformed representation agreements and created BCITS and EATI, Ken Fraser of the Vancouver Resource Society, PLAN, the Auton litigants and many more…for some reason BC produces more than its fair share of leaders. Maybe it’s the rain.
As the 19th century Canadian public servant, journalist and politician Joseph Howe stated:
“My public life is before you; and I know you will believe me when I say, that when I sit down in solitude to the labours of my profession, the only questions I ask myself are, What is right? What is just? What is for the public good?”
What is right, what is just, what is for the public good in the Best Place on Earth?
Voters with disabilities and their families and allies must, as the poet sang, “kick at the darkness ’til it bleeds day-light.”
To follow links referenced in this article visit http://civilrightsnow.ca/2011/07/civil-rights-now-july-7-2011-presentation-at-kwantlen/.