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COVID-19 and the crisis in memory and compassion

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Image: PublicDomainPictures/Pixabay

"Mattresses full of urine; wheelchairs they were sitting in were drenched with urine. I believe they were sitting in urine and feces for about a day or so … When I got into my car, I still had the stench of urine and feces up my nose. I broke down and cried." (City News, April 8, 2020.)

"The stench here is appalling ... Many patients are so helpless they cannot be toilet trained. The floors are scrubbed as often as three times a day by an overworked staff but, since they are wooden and absorbent, no amount of cleansing will remove the odors of 70 years."  (Toronto Daily Star, 1960.)

"Several patients, they were bedridden with a wet, wet diaper and calling out incessantly for help … It was just -- it was mayhem." (CBC, April 5, 2020.)

"This is what it looked like. This is what it sounded like. But how can I tell you about the way it smelled?" (Geraldo Rivera. 1972.)

2020 will go down as the year of COVID-19. The global pandemic has turned cities into ghost towns and toilet paper into a fetishized commodity. As most of us try to settle into the new reality of social isolation complete with digitally Zooming into work and visits with family and friends, a horror is once again revealing itself to the nation: the warehousing of people in long-term institutional or congregative facilities. 

The four quotes at the beginning of this article are describing what life is like in long-term congregative facilities. Two are describing the reality of institutional life under a COVID-19 outbreak, while the other two are describing the everyday institutional life for people with intellectual and or developmental disabilities from the 1960s and 1970s. The similarities are striking, but the details should not be surprising. 

Nearly half of all COVID-19 deaths in Canada are linked to the outbreaks in long-term congregative facilities. The Lynn Valley Care Centre in North Vancouver, B.C, the Herron long-term care facility in Dorval, Quebec, and Pinecrest Seniors Home in Bobcaygeon, Ontario have all been lead stories in the media in April 2020. 

The current debate over what went wrong has connected this crisis to neoliberal politics that have caused the rise of austerity measures, and privatization and deregulation. It's all about the rights of corporations over citizens; profits over people. The effects this has had on long-term care facilities is the reduction of government inspections, understaffing, an emphasis on part-time, low-wage work with few benefits, and low staff-to-resident ratios. There has been a call for increasing the wages for support staff and workers, and to stop workers from working at more than a single workplace. Support staff and workers are essential workers, and they should receive higher wages with benefits. However, putting more money into long-term congregated care facilities is not the answer. While neoliberal politics are responsible for the deterioration of the social safety net, neoliberalism is not responsible for why long-term congregative facilities make up nearly half of all deaths and represent the epicentre for most outbreaks.

What went wrong was the decision to provide institutional care. Public or private, institutional care leaves people vulnerable to neglect and abuse, and, as COVID-19 is demonstrating, vulnerable to viruses on a massive scale. Institutions are not determined by how many people live in them, but rather are characterized by the following:

  • Lack of autonomy -- little to no choice.

  • Housing connected to health care and personal assistance.

  • Congregating statistically similar people together.

  • Living with strangers.

  • Isolated from families and wider community.

  • Distrust of staff.

  • Restraining routines.

  • Poor quality of food.

  • Delays in getting help.

  • Little to no privacy.

  • Inadequate facilities.

  • Long, boring days.

  • Not a home.

  • Abuse and neglect.

Once you remove someone's rights and autonomy, you start to see them as somehow less-than human. It then becomes easier to adapt to a culture of abuse and neglect. Key to the disciplinary power of institutions is the culture of fear amongst the residents, and the culture of silence between staff who despite not perpetrating abuse remain silent and tell no one.

In 2018, CBC examined six years of statistics from the Ontario Ministry of Health and Long-Term Care and found that on average six seniors were being abused every day in 2016. A 2018 World Health Organization report examining nine studies from six countries found that while only one out of 24 cases of abuse are reported, two out of three staff admitted perpetrating abuse over a one-year period. 

While neoliberalism began in the 1980s, the institutional model first emerged in the late 1800s and is deeply connected to the ideology and history of colonialism and eugenics. Significant in this history and forgotten in our collective memory is the institutionalization of children and adults with intellectual disabilities. These institutions were located right across Canada and were government run. Families were not given a choice as to whether to keep their children and loved ones at home with no supports or hand them over to the institutions where they were assured they would get an education and the full supports they needed. For the most part, they were cut off from their children and loved ones and lost decision making abilities and visitation rights while their children were victimized by the institutional culture of abuse and neglect. 

In 1960, Pierre Berton wrote an exposé published in the Toronto Daily Star that documents the Huronia Regional Centre in Orillia, Ontario, which was at the time called the Ontario Hospital School. This institution was run by the provincial government. The second quote at the beginning of this article is from that story. The centre first opened in 1876 and was an institute for children and adults with intellectual disabilities. At the time of Berton's story there were 2,808 residents living there. Former residents described experiences of "being kept in caged cots, having all their teeth removed for safety reasons and being held upside down with their heads under running water as punishment for not eating" and "routine beatings, degrading treatment and the frequent use of psychotropic drugs to manage behaviour." 

The Woodlands Institute was run by the provincial government of British Columbia and opened in 1878. It was located on the Fraser River in New Westminster, a mere 30-minute drive from Vancouver. Trapped inside with windows too high to look out of, children and adults with intellectual disabilities were victims of not only isolation but also abuse. In 2001, a provincial government report identified horrific physical and sexual abuse as well as neglect. Documented abuse included "kicking, smacking, slapping, striking, restraining, isolating, grabbing by the hair or limbs, dragging … verbal abuse including swearing, bullying and belittling … sexual abuse included assault, intercourse and in the result, injuries and in a few cases, a pregnancy."

Woodlands closed its doors in 1996, marking the end of large-scale institutional care in British Columbia. The Huronia Regional Centre was closed in 2009, and Ontario ended its large-scale institutionalization policy the same year. There were class action lawsuits and provincial apologies. Despite the closures and apologies, the industrial warehousing complex that saw 3,000 children with intellectual and or developmental disabilities living in Woodlands has now been replaced with new institutional models called centers, homes, group homes, intentional communities and facilities. 

Today, there are approximately 30,000 adults with intellectual disabilities living in long-term congregated facilities in Canada while there are approximately 425,000 seniors. A further 10,000 adults with intellectual disabilities under the age of 65 are living in hospitals and seniors long-term congregated facilities. Everyone in a facility that is founded on the institutional model is vulnerable to abuse, neglect and pandemic. 

It isn't just seniors' facilities that have seen COVID-19 outbreaks, neglect and abuse. Participation House in Markham Ontario receives government funding and is a 42-bed group home for adults with intellectual disabilities. As of April 15, 2020, 37 residents and at least 13 staff have tested positive. Two residents, Martin Frogley and Patty Baird, have both died from the outbreak. Make no mistake, this is not a home. 

The fourth quote that started this article was from a Geraldo Rivera documentary from 1972 exposing the infamous Willowbrook Institute in New Jersey. The following headline captures what was happening in New Jersey in April 2020:

"Death Toll Climbs Inside Group Homes for the Developmentally Delayed: Advocates say that because many of the [intellectually] disabled live in congregate residential settings with underlying health conditions, they are exponentially more likely to get sick and die from the novel coronavirus"

Pierre Berton closed his expose on the Huronia centre with the following warning:

"But Orillia's real problem is one of public neglect. It is easier to appropriate funds for spectacular public projects such as highways and airports than for living space for tiny tots with [disabilities]. Do not blame the present Department of Health for Orillia's condition. Blame yourself.

Remember this: After Hitler fell, and the horrors of the slave camps were exposed, many Germans excused themselves because they said they did not know what went on behind those walls; no one had told them. Well, you have been told about Orillia. It is, of course, no Belsen. In many respects it is an up-to-date institution with a dedicated staff fighting an uphill battle against despairing conditions. But should fire break out in one of those ancient buildings and dozens of small bodies be found next morning in the ashes, do not say that you did not know what it was like behind those plaster walls, or underneath those peeling wooden ceilings."

We have been warned again about the horrors of warehousing people in facilities that are founded on an institutional model. Only this time the warning occurred not because of a fire or an old dilapidated building, but over COVID-19. You have heard the history, you have heard the stories, and now you know. But will you remember? We need to say no to all institutions and work with our governments and our community partners to create inclusive communities where everyone, young or old, receives the supports they need and can live a life with dignity and free from fears of abuse, neglect or deadly outbreaks. 

What does this newer rights based model of long-term care look like? That will be discussed in the next article. 

Fiona Whittington-Walsh, PhD, teaches at Kwantlen Polytechnic University in British Columbia. She is president of the board of directors for Inclusion BC.

Image: PublicDomainPictures/Pixabay 

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