Written by Dr Sally Witcher, December 2022

Disability equality and inclusion expert and activist, and Zero Covid Scotland member Sally Witcher explains the lack of sense in the Scottish approach to Covid and its’ related harms whilst also touching on what an inclusive safe alternative should look like.

For everyone, the arrival of the pandemic and the ensuing lockdown was a terrible, traumatic shock. We all found ourselves battening down the hatches. Rich, poor, whether or not we were at clinical or other risk not yet understood, we were all imprisoned in our own homes, fearing for our lives, with our rights to freedom of association, freedom of movement, among many other rights denied to us. But while, in some respects, lockdown was a great leveller, it may have been the same storm, but our boats were not the same. Therefore, the impact on different people was very different. That’s the thing about equal treatment. Sometimes it’s what’s needed to promote equality; sometimes it exacerbates pre-existing inequalities.

For some people there were elements of ‘welcome to my world’. Disabled people have long experienced barriers to inclusion like negative attitudes, inaccessible buildings, transport, communications, etc that curtail our freedom. In fact, it’s often these that disable us, not our impairments. Interestingly, when the majority found themselves briefly in our world, things previously declared impossible, like remote working became possible. With widespread use of online technology, the boundaries between inclusion and exclusion were redrawn, potentially offering scope for greater inclusion in some ways, while erecting new barriers in others.

The inclusion/ exclusion boundaries are still being redrawn, sometimes regressively, back to where they were, sometimes with an added new twist. Having opened up online access to participation in meetings, events, courses, performances, etc., much has moved back to in-person only. Attempts at hybrid events – surely potentially the most inclusive option – are often poorly executed despite the technology now being available to do them well. Alternatively, the availability of online can be used as an excuse to do nothing to enable in-person physical access, including Covid-safety.

In some cases the moving of boundaries have simply and clearly had consequences so extreme that in my lifetime I’m hard-pressed to think of examples of greater avoidable inequality and exclusion. And that doesn’t just apply to disabled people. Because now something else is going on.

As I see it, the pandemic did more than super-charge pre-existing inequalities. It, and just as importantly responses to it, has reframed them. Covid caused a new societal fault line. It ripped a new tear in the societal fabric, bringing new drivers to pre-existing inequalities, and new manifestations of inequality and exclusion. It reframed inequality around risk of ill-health, becoming disabled, and death. It revealed two key types of risk to be mitigated – clinical risk and exposure risk, which combine to generate poor outcomes.  Longstanding familiar barriers too were reframed. New forms of attitudinal barriers include the hostility and indifference displayed towards older people and those with health conditions (who cares? They’re going to die soon anyway, etc); even towards those wearing masks in an attempt to keep themselves and others safe. Inaccessible buildings now encompass those that aren’t Covid-safe, and so on.

In different ways, clinical risk and exposure risk are disproportionately experienced by groups with protected characteristics, like gender, race, age, disability, and socio-economic status, sometimes because certain groups are disproportionately represented in frontline workforces. But there are also people without protected characteristics who have been very adversely impacted, for example because they have health conditions that were perfectly well managed but which Covid attacks. They in effect constitute a new equality group. Moreover, the often-inexplicable ways in which government has targeted protections on some but not other groups have compounded all manner of inequalities.

I’d like to offer a view from the far side of the social divide. On one side it’s all about recovery and learning lessons with the benefit of the distance of time having elapsed. On the other, the pandemic is still very much here. For one side, ‘restrictions’ curb civil liberties; for the other these are ‘protections’, the absence of which curbs civil liberties.

A few months ago, people on the highest clinical risk list were told they were no longer at high clinical risk because of vaccines and antivirals. Yet, mysteriously, many had no access to Spring boosters or antivirals. We knew vaccine protection wanes and there was nothing to suggest our underlying clinical risk had diminished. So how come our risk was now the same as everyone else’s? This was never explained. Meanwhile, the 500,000 people in the UK who are immunocompromised, whose bodies can’t produce antibodies in response to vaccination, were targeted for vaccine boosters while being denied the drug Evusheld that would give them the antibodies they lacked. It’s a drug available in 32 countries, supported by over 125 clinicians across the UK from 17 specialisms. The only way people can access it here is to pay £1000 a pop. That’s the price of their freedom. Many can’t afford it.

To combat exposure risk, there’s powerful evidence of the benefits of clean air, not just fresh air but air filtration to remove viruses and other nasties, bringing obvious preventative health benefits. Yet action is painfully slow here, and sometimes has been explicitly rejected (e.g. there have been examples of schools explicitly refusing to act). That too makes less than no sense.

When mask mandates were lifted, the First Minister of Scotland and the Cabinet Secretary advised people to still consider wearing masks and urged them to remember to protect the vulnerable. We, the people now-rendered-vulnerable by the lifting of mask mandates, wondered why our equal rights to active citizenship had been relegated to an afterthought by hopefully well-meaning people. ‘Freedom Day’ marked our indefinite imprisonment for the crime of our clinical status. We became the modern-day lepers. The people who wanted to stay well were the isolated outcasts, not the people who risked other people’s health. There was a fundamental imbalance. Freedom for some meant loss of freedom for others. Civil liberties became a seesaw.

Meanwhile, emerging data on Long-Covid clearly confirms that ‘the vulnerable’ can include anyone exposed to the virus, regardless of their pre-existing clinical status. In Scotland, the number of people with Long-Covid roughly equates to the population of Aberdeen. The sectors most impacted by long Covid include health care, social care and education. Robust research evidence has demonstrated that repeat infection makes multi-faceted long-term damage and Long-Covid more likely. Far from strengthening immunity, infection damages the immune system making us more susceptible to other forms of illness. Herd immunity is not a thing. In fact this rather look like the opposite of herd immunity – the weakening of the whole herd.

So, while the predominant narrative is that the pandemic is over, hardly anyone wears a mask and those that do risk hostility, the result is that many people are still shielding, unpaid carers are bearing the heavy burden of a collapsing social care system and over 2 million people in the UK of all ages and former health statuses have had their lives destroyed by Long-Covid. Yet the general public seems unaware of the ongoing risks, not least because governments have made no discernible attempt to tell them. Having offloaded onto individuals the responsibility for keeping themselves and others safe, government has failed to enable us to make informed choices on what to do.  

For me, the key learning includes that we need to focus attention not just before crisis strikes and the time when it does, but on how it continues to play out in the longer term. Until we understand why we’re not doing that, there seems little hope that civil liberties will be equally restored, of preventing ongoing damage to people’s lives, the economy, education and the NHS, or of handling the next global shock any better.

While public and political debates about civil liberties overwhelmingly, and in many ways understandably, focus on the legitimacy of government-imposed lockdowns, mask mandates, etc., it isn’t just government action that restricts freedom but government inaction when it has the option of preventing harm. Therefore, rather than judging a society on how it treats its most vulnerable, perhaps it should be judged on how many people it makes vulnerable when it has the wealth and the tools not to do so. The truth is there is now a great deal that could be done to level the freedom/ lockdown see-saw. A safe, inclusive new normal that maximises everyone’s freedom is now possible. Surely that is where we need to focus attention.

So why aren’t we?