Stigma is something that all of us are living with
as we make decisions about how to navigate this pandemic.
But it seems to be a kind of public secret.
We're not talking about it on a national stage.
We're not talking about it in the halls of power.
We think stigma needs to be part of the conversation
as we move towards a better world after this pandemic.
So we entered into the COVID-19 policy conversation
right in the middle of the first wave.
Our PI Professor Laura Bear was invited to be
on the SAGE SPI-B committee which is the group of behavioural
and social scientists who are contributing
to government policymaking during the pandemic.
So professor Laura Bear was given a brief to try
and understand what a good death might look like
in these difficult circumstances,
where people are unable to follow their usual rituals and rights,
of burial, funerals and bereavement.
We had a particular set of tools that the rest
of the government research facility didn't have
where they usually run focus groups or surveys.
We were able to interview key figures
across ethnic minority communities, faith communities,
and other vulnerable groups in order to understand
what this moment was like for them,
particularly those communities who were experiencing
excess death or disproportionate death.
For example, ethnic minority communities.
What we were able to gather was that this was a moment
of collective trauma across communities.
Everybody was experiencing this sense of untimely death.
The fact that people were dying before their time
and they weren't able to be buried
or given a respectful and dignified funeral.
And we were able to give
some really important recommendations
about how to ease this sense of trauma.
These included things like memorialisation,
having a right to say goodbye in hospitals,
and the prevention of mass cremation
which could have been extremely traumatic
for some communities.
We were able to write a very rapid report that fed
into government policymaking circles
and was able to change the response right in that first week
around Easter, when the mortality rates were the highest.
So what we picked up on in that moment was that
that sense of untimely death
was really disturbing for many communities.
People felt really anxious.
They felt really fearful, and that was compounded
with other forms of uncertainty
that were affecting all of our lives.
The relationships that make up our lives
through the very substance of the way we live and care
for each other and show up for each other were truncated.
We were unable to connect to people who we care for,
for elderly, for younger people, for those who are disabled.
We were also stuck at home with certain others
where the relationships were extremely pressurised.
This produced a perfect storm of uncertainty.
Government policymakers were also experiencing uncertainty.
They didn't have a full picture of what was going on.
And so we decided that we could deploy
our anthropological expertise and our ethnographic methods
to try and pick up on how people
were experiencing this moment of uncertainty.
We were able to look at the inequalities
between different people's experiences.
And that kind of scaled up to a broader picture
of how the pandemic was playing out across the UK.
We did this by particularly doing two kinds
of methodological things.
The first was to try and illuminate slices of life.
So our team have existing links to different parts
or communities in the UK.
And they were able to activate these links to shed light on,
for instance, what it was like to be homeless in Cambridge,
what it was like to be a small business owner in Ely,
what it was like to be someone working in a local authority
in the Northeast or a mother in London.
And we put these slices of life together
into bigger case studies where we were able
to contrast different people's experiences of the pandemic.
From this we realised that some
were being disproportionately impacted
by transmission and mortality, but also by financial loss
and other forms of social distress.
So for decades, anthropologists have been studying
the relationship between illness and uncertainty.
And what many have found is that in situations
of uncertainty, people seek to build boundaries.
This means that they try to separate out
those who are risk givers, people who can make them sick
or risk epidemiological transmission
and those who are risk takers
or those who are particularly vulnerable
to experiencing adverse impacts of that particular risk.
So dividing the world into risk givers and risk takers
is not always based on evidence.
People do this speculatively.
And speculation means that you're trying to project
some kind of order onto a radically uncertain future,
as Professor Laura Bear talks about
in a lot of her other work.
We see that this act of splitting the world
into risk givers and risk takers works to polarise, exclude,
and sometimes even stigmatise certain groups
because they're associated with increased risks
of epidemiological transmission, not based necessarily
on evidence, but sometimes based on rumour or stereotypes.
So that work of managing who was a risk giver
or who was a risk taker was something
that we were all doing
and we all still are doing in this moment of the pandemic.
The work of managing risk is part of every decision we make
about who we allow into our homes,
where we go to do our grocery shopping, where we go to eat,
where we go to meet our basic needs.
We also realised through our work that this kind
of management of risk fell unequally
to some people in the household more than others.
Particularly women had to do the work
of managing risk for their children and elderly relatives.
This became part of the work of care.
We realised that this was a really interesting moment
for understanding what it meant to care for people
because it meant both cleaning, making the house
or place of work hygienic,
but it also meant managing which relationships
were deemed safe or unsafe in order to prevent the risk
of epidemiological transmission.
So through our research across the UK,
we've realised that there were some groups
who were experiencing stigma more than others.
The first group we realised who were experiencing stigma
were essential workers, particularly from the beginning days
of the pandemic where people were really scared
of those who were unable to lock down.
We realised that some of these people were being excluded
from social bubbles or asked to leave their residence
because of fear that they would bring the virus home.
We also realised that young people were being stigmatised.
- Dozens of young people doing what dozens of young people do;
partying and enjoying the summer.
They were being blamed for meeting up outside the home
or bringing the virus home from school at some times,
which wasn't always necessarily the case as often
they had to shoulder caring responsibilities
where their parents or grandparents
were unable to leave the house because of shielding.
We also realised that minoritised groups
were being stigmatised.
This was particularly an output
of the Public Health England report that noted
that certain minoritised groups
were experiencing higher levels of mortality.
This was also experienced by these minoritised groups
as a heightened sense of vulnerability,
where people were really scared
about what this new information meant.
Another group that we saw who experienced stigma
were those who lived in cramped accommodation
or accommodation that was not necessarily spaced out
so people suspected that people couldn't social distance.
We saw the stigmatisation of multi-generational households
as a critical thing that actually worked to deepen divides
of racial or ethnic minority stigma.
It's essential that we address relations of stigma
that have emerged during this time of uncertainty
so that they don't continue beyond this crisis.
We can do that by building solidarity between communities
not just through communications that use good language
but also by supporting communities who feel marginalised
in this time.
The Community Champions initiative
is essential to this, for instance.
So is ensuring that financial support and I suppose,
as in the government's terms, levelling up
of different places occurs over the course of 2021.
We also think it's essential that we ramp up
the amount of ethnographic and qualitative research
we have available to us on how these social divides
are playing out and interacting with other forms
of social change that we're experiencing, like Brexit.
Further, we think it's really essential
that we increase the funding and support for people
who've experienced mental distress
as a result of this pandemic and as a result
of the new relations of stigma that have emerged from them.
This could be through local care centres,
increased community-level mental health funding,
and funding local community groups to provide
culturally appropriate care for people who need it.
We think stigma needs to be part of the conversation
as we move towards a better world after this pandemic.