I was interested to read what the CEO of Netflix said in response to a question about what he thought was behind their huge increase in subscriptions during the pandemic? Reed Hastings felt the crucial aspect was stories, how much we need them at this moment. Stories to share, to help us understand, to laugh and cry. And to connect to other people and feel connected ourselves.
What is the story about people with learning disabilities and this pandemic? Is it the story of the battle for people to be considered a priority for the vaccine? For example, personal accounts like BBC Radio 2’s Jo Whiley and her fright for her sister to get vaccinated, or the actor Rory Kinnear’s moving account of his sister Karina, who died from Covid; how valued and loved she was, “death was not a release and was not welcome”.
In contrast, there was the anger about the use of DNAR notices and how for much of the time, academics were unable to get the numbers and statistics of people with learning disabilities who had died. Finally, the stories of care and sacrifice from underpaid care staff. Will all this be forgotten now we are emerging from lockdown? If this is the case, it should be of concern to us all in the learning disability community.
I am involved with some historical research with Professor Stuart Todd from South Wales University, looking at how the old long-stay hospitals for people with intellectual disabilities dealt with death. We found that when the patients died there was no marking of it, rarely a funeral, no rituals. Often it seemed that the person disappeared, with further evidence that people were buried in mass graves. Recently there was the scandal with a long-stay hospital graveyard in Lancashire, moved for a block of flats by developers, without any consultation.
Further reading
Myself, Todd and colleagues were also involved in looking at the Spanish flu pandemic and death rates in an institution in 1918, which was huge and yet there seemed little concern about this.1 It is very clear that pandemics affected those people with a learning disability disproportionally from the rest of the general population. They are vulnerable not only in terms of their physical health, but also how we in society respond to them.
We need to stress that this group is valued. To do this, we need something to acknowledge and mark these deaths, in contrast to these historical accounts which has tried to erase them from our collective memories. There has been a lot of discussion about how this pandemic will affect our society in the long term, will it result in a more caring society as a result?
It can sound like a cliché but is often mentioned by politicians that, ‘we mark a good society by how they look after their weakest members’. A major event would send out a powerful message that this group matter, that we should pay attention to them. That these deaths matter.
I think it will help with all our grief. Grief is part of the human condition. There is no escape. Grief is strange as it is an internal experience, something that happens inside us, but is also affected by the social environment. Sometimes it feels locked within us and can stay there for a long time. In my view, we don’t recover from grief. We live with it. We need to accommodate it, and this means our losses will revisit us often in surprising ways. But also through the shared experience we can start to develop empathy and compassion, there is pain in grief but also hope. This is why the social aspect of grief is so important.
Coming together, being together, being part of a community. In a way, that is why we have funerals. Funerals are for people left behind. There is a lot of evidence now highlighting how people with learning disabilities are vulnerable to grief, for example being excluded from rituals, or how they lack appropriate grief education.
How do we engage the broader community with powerful and dramatic stories, these stories of loss and sadness, love and anger too? If we get interest in this, then we could also get interest in other stories, like why the shocking high Covid death rates, up six times the general population.
Even prior to the lockdown, there were concerning facts; life expectancy for this population is 27 years shorter for women and 23 years for men, and much too often, people die from conditions that rarely kill others.
I am concerned that once the British population is fully vaccinated, the government will have its happy ending, so will want to move on. It is claimed that after the first World War the government of the time was concerned that the county would be affected by the losses in the war, and we would not get back to the task of rebuilding the country. They wanted to limit the grieving.
Do need a day of mourning for people with learning disabilities? Some of the major services providers should get behind it this and support this initiative. And we should remember what Rory Kinnear’s wrote of his sister, “No one could describe Karina as weak: she did not have it coming, she was no more disposable than anyone else”.
David O’Driscoll is a NHS psychotherapist working in a learning disability service and a Visiting Research Fellow at the University of Hertfordshire
