Being able to get out of bed is something many people take for granted
By Paul Caune
July 21st, 2022
Paul Caune writes about one of the most notorious restrictions he experienced as a long-term care resident.
While the one up, one down rule was widely abhorred by Caune and other residents, few challenged it because they didn't want to upset the status quo.
THIS IS THE RULE
Vancouver's George Pearson Centre
The front-line staff of George Pearson Centre (GPC), a 70-year-old long-term care facility owned and operated by the Vancouver Coastal Health Authority (VCH), tell its prisoners that they will get them out of bed only once a day.
If for any reason a prisoner wants or needs to go to bed before 7pm and 9pm bedtimes, the prisoner must stay in bed until the next day. The staff tell them this is the rule. It's called the one up, one down rule.
Given the fact that most GPC prisoners can't get in or out of their beds on their own, this rule is what a public affairs wonk would call problematic.
This rule is what a public affairs wonk would call problematic
If after being put in their wheelchair by the staff in the morning they soil themselves, they are given a choice to make a trade-off: either sit in it until bedtime, or go to bed now and we'll clean you, but you must stay there until tomorrow.
Remember that next time a BC NDP or Liberal cabinet minister scolds the public that good governance isn't about doing the popular thing but about making trade-offs.
Look at the case of a former GPC resident whose experience was described in Doing Whatever It Takes: Profiles of Peer-Supported Transition from a Care Facility to the Community.
Nancy, diagnosed with cerebral palsy when she was a year-and-a-half old, first moved into Pearson when she was 18.
Apart from the odd day trip and her weekly church attendance, she lived there continuously for the next 29 years.
The ebb and flow of her life was defined by other people: "It was noisy there," she said. "There was no privacy and not much freedom. There were bowel movement days and bed times".
There were also rules about wheelchairs: you could only get into your wheelchair once a day. If you got tired or uncomfortable and asked to be put back to bed, that was it—you stayed on your back until the following day.
If you got tired or uncomfortable and asked to be put back in bed...you stayed on your back until the following day
While at Pearson, Nancy rarely went out. Apart from her weekly church trips, she usually stayed on hospital property. She couldn’t do her own shopping, so her mother brought her clothes.
If her parents came from the interior, they needed to stay in a hotel and could only spend limited time with their daughter.
NOWHERE ELSE TO GO
Paul Caune lives in his own home now, but spent nearly two years at Pearson
The one up, one down rule is so notorious inside the disabled community that I knew about it before I served my time in GPC.
In 2005, when I was trapped in Lions Gate Hospital and refused to consent to live in GPC, VCH and the BC General Employees' Union (BCGEU) tried to convince the public that I was wrong about the one up, one down rule:
Viviana Zanocco, a spokesperson for the health authority, said the Pearson facility is not nearly as bad as Caune makes it out to be.
“He said quite a few things about George Pearson that are simply untrue,” said Zanocco. Caune’s claims that he would only be bathed once a week, and that he would only be taken out of bed once in 24 hours are false, she said.
A number of Caune’s specific complaints were not accurate, said Stephen Howard, communications officer for the BCGEU. "There is no cap on the number of lifts per day", he said.
Everybody knows that those without the talent to be real doctors become spin doctors or psychiatrists.
I cut a deal with VCH that if I consented to live in GPC for a maximum of two years, they would give me a written commitment to get me a place to live in the community.
VCH even agreed to my demand that their CEO sign this written commitment. During my 21 months in GPC I was repeatedly told by its staff that “one up, one down” was one of the rules there.
CONTROL
In April 2006, I was one of 46 and the then 120 prisoners interviewed for a report by the Community and Residents Mentors Association (CARMA) and the Pearson Residents Council.
Envisioning Home, Participatory Action Research with George Pearson Residents was published in 2008.
The report states: “Over a third of those who said GPC was home qualified their answers by stating that it was home because they had nowhere else to go."
"Some residents stated very clearly that no one would choose to live in GPC if they did not have to. For these residents GPC met their medical needs but it was not the place they wanted to be or enjoyed being."
Residents consistently gave three examples in which the routine challenged the reality of GPC as home: being able to have a bath or shower more than once a week; being able to go back to bed for a rest and then get up again during the day; and having to remain in bed on days when they were to have a bowel routine.
They described these three things as being pretty basic and that they were really about having some control over your own life.
They believed that it was not unreasonable to want to have a shower more than once a week, or if they were feeling like it, to go back to bed for a rest and to then get up again.
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.
A number of residents commented it was the "squeaky wheel gets the grease"–it was the most vocal residents who had their needs or issues addressed. Residents also discussed their fear of negative consequences if they complained too much or made a fuss.
SUFFER WHAT THEY MUST
Andrea Wildman before and after entering long-term care
One day in 2007 I vented my frustration about the one up, one down rule to one of GPC's managers. A few months later I was asked to substitute for the usual Residents' Council representative at a quarterly meeting of GPC managers.
At this meeting the manager I'd vented to earlier, to my surprise, informed the group that after a careful study of GPC's policies and procedures she found no evidence that the hospital had a “one up, one down” regulation: the front-line workers had imposed their own rule on the residents.
Then the manager of residential services, the boss, told her subordinates that she had never heard of the one up, one down rule, had not known the front line staff were imposing this on the residents, and that she would stop this imposition.
How long had she been the boss of GPC at this point? Six years.
I escaped GPC a few weeks later, on September 24, 2007. Fifteen years later, I was chatting with a new prisoner of GPC.
He vented to me about how bad life was inside the hospital and how desperately he wanted to escape from it. "Could you give me an example of what's so bad?" I asked. He answered: “the one up, one down rule.”
"Could you give me an example of what's so bad?" I asked. He answered: "the one up, one down rule."
Why do the prisoners of GPC submit to this tyranny? To quote from the Envisioning Home report again: “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”.
And: “Research indicates that placing elderly or disabled persons in an institution where they become passive recipients of care, often results in rapid mental and physical deterioration which may jeopardize quality of life".
The strong do what they will, the weak suffer what they must.
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to spencer@bcdisability.com!
