What About Shielders?

Disabled people say they feel 'worthless' and 'invisible' as Tories lift pandemic protections.

by Sophie K Rosa

24 February 2022

A woman in a mask and 'protect your community' t-shirt
(Sophie B/ Instagram: busybeingdisabled)

Against the advice of public health experts including doctors and scientists, the government is lifting all remaining pandemic protections in England. 

The Tories’ living with Covid plan already means that – as of 21 February – staff and students in education settings no longer have to test for Covid-19 twice weekly, unless they have symptoms. From 24 February, infected people will no longer be legally required to self-isolate, self-isolation support payments of £500 for those on low incomes will no longer be available, and routine contact tracing will stop. And from 1 April, people will have to pay for coronavirus tests, Covid passports will no longer be recommended, apart from for international travel, and employers will no longer have to factor the virus in as a distinct risk factor for workplace safety measures. Scotland, Wales and Northern Ireland are all easing protections further as opposed to scrapping them entirely. 

Despite this, millions of people are still having to shield from the virus due to their increased clinical vulnerability to severe, long-term illness or death if they catch Covid-19. 

Sophie K Rosa spoke to three people who are shielding about their experiences, and what they think about the government’s decision to lift all remaining Covid-19 protections. 

Sophie B.

“Now that everything is open for the healthy, but not for clinically vulnerable people, I have to constantly push down suicidal thoughts, and keep breaking down in tears. There’s no end in sight.”

I’ve been somewhat shielding since March 2020. I’m only 27, but I’m clinically vulnerable due to having ME/CFS. I am more affected by viruses and take much longer to get over them (I’ve been struggling with flu for over a month). Catching Covid-19 risks worsening my pre-existing post-viral symptoms of fatigue, muscle pain and brain fog, which already reduce my capacity. Coronavirus is more worrying than other viruses because many cases are symptomless, because it’s very transmissible, and because it has a relatively high likelihood of post-viral effects – especially for those susceptible to them. 

I’ve felt forced to shield because of the absence of proper Covid-19 regulations, and it’s been terrible for my mental health. It’s taken away many of the small things that made life enjoyable. The lack of proper precautions on transport has restricted my freedom of movement and taken away leisure activities that once helped to reduce the difficulty of living with a debilitating chronic illness. My relationships have also been placed under strain. I’ve wanted to be able to rely on people to care. No one should be expected to live in isolation. 

We’re not all in the same boat. In the lifting of restrictions now, there’s no accommodation for clinically vulnerable people’s needs. While the relatively healthy are able to return to normal, with all restrictions – or, rather, precautions – removed, the clinically vulnerable are expected to isolate indefinitely, so everyone else can get on and have fun and the economy can grow. That makes me feel worthless, invisible and like a second-class citizen – as if society is only open to certain people. I don’t think we should be under constant lockdown, but is there not a middle ground – of safety and involvement, and accommodation? 

The government is focusing on profit and party-pleasing, rather than scientific advice and feedback from sick and disabled people. Now that everything is open for the healthy, but not for clinically vulnerable people, I have to constantly push down suicidal thoughts, and keep breaking down in tears. There’s no end in sight. I feel even more terrified of becoming even more sick and disabled, when my capacity is already so low. Lifting all restrictions just suggests that the pandemic is over – when it’s just that the government has decided it wasn’t worth putting resources into protecting people from it anymore. There are a lot of things I want to do, but I am unable to. I just have to watch other people do them, happy and mask-less. We need to get to a level of safety where everyone can resume a relatively normal life, with precautions to manage the virus. I’d like to see low case numbers coupled with measures to keep them low. 

Mary.

“There’s no amount of self-care that can keep people safe and well when they are totally isolated and being told that everyone would have a better life if they died.”

I’ve been shielding since January 2020. I was following the news about Covid, since the news about the whistleblower doctor in China. I managed to get some pretty battered N95 masks on eBay. The last proper time that I hugged people outside of my house was 2 March 2020, my mum’s birthday; we knew we wouldn’t see each other again for a really long time.

I haven’t found shielding itself too bad most of the time, that’s my sphere of control – though living alone when the cost of living is rising, and not being able to have a housemate, is really tricky. The experience of being disabled in a pandemic, however, is horrendous and I don’t know if I will ever recover from the trauma of everybody comforting each other with eugenics. Saying things like, “don’t worry, it’s only the sick and the elderly, those worthless lives, we can throw them away”. I feel like that’s the implicit statement behind the reassurance people give each other about Covid.

The government announcing all Covid protections being lifted was very painful. I’ve cried all day, every day, since. I really value the idea that self-care can’t be the sole way we foster wellbeing in late-stage capitalism; there’s no amount of self-care that can keep people safe and well when they are totally isolated and being told that everyone would have a better life if they died. The government will try and kill off as many state-dependent citizens as they can – that is one of the big Tory goals. 

I don’t use the word restrictions in relation to Covid protections. I think it’s a really important political point not to. It’s offensive and a massive failing of public health communications and policy. The lifting of these protections means that many of us have never been more restricted in our lives. In countries where individualism is less rampant, the word restrictions isn’t used. The lifting of these protections mean I’m not going to feel safe outside my house again – my disabilities all began with a virus, and I’m very vulnerable to viruses making me really ill long-term. I don’t consent to the idea of endemic Covid when the NHS is on its knees. I’m enmeshed in the disability community and I have friends who die because of medical malpractice and the underfunded health service routinely. 

The end of free tests doesn’t just mean only the rich will be able to afford them, but that the rich will just have them freely available – in workplaces, in private schools and so on. I think that the government should be giving out N95 masks and should be doing really strong public health messaging. One of the best public health campaigns that’s ever happened was ‘Slip-Slap-Slop’ in Australia, which massively reduced the number of people that got skin cancer every year. 

I barely see any of my friends and family who aren’t disabled anymore because I just feel a total loss of safety around people who aren’t vulnerable to the eugenicist policies around Covid.

Jennie Flint.

“The inaction combined with recent news about government partying makes it seem like they think it’s fine for disabled people and people who are immunocompromised to just die or be ill if that means everyone else can go to nightclubs and walk around without masks.”

I’ve been shielding for two years because my underlying condition means I need to take immunosuppressants. It’s been a very limited existence. I haven’t been to the office or a supermarket for two years. I only socialise outside, with very limited groups or individuals I know that I can trust. I’ve only seen my parents a couple of times, in my garden. I’m an extrovert, I had a social life before this. I also know I’ve been very lucky in being able to shield; I can work from home and my employer has been understanding. Not having children has made it easier, too.

I didn’t have high hopes for how this government would support people shielding, but the complete prioritisation of the economy over people’s lives and mental health has been astounding. The inaction combined with recent news about government partying makes it seem like they think it’s fine for disabled people and people who are immunocompromised to just die or be ill, if that means everyone else can go to nightclubs and walk around without masks. As if that’s more important than us being able to rejoin society. It’s been traumatising; I’m seeking help from mental health services I wouldn’t have needed otherwise. I don’t trust anyone who doesn’t have a vested interest in keeping me alive. I don’t trust authority, either.

It is insane that the government is lifting all restrictions. I’m a scientist; I know vaccinations help – but they can’t be the sole tool we rely on. With the Omicron wave, we’ve seen that vaccinations alone aren’t enough. Dropping all other restrictions is putting political careers and the economy ahead of people’s health. The implications of it for me are continued isolation. If we had masks, testing and isolation if you’ve got coronavirus – alongside vaccinations – I feel like I could start to go out into the world again. I might be able to go to a restaurant, see my parents inside, and sometimes go into the office. As it is, how can I feel safe rejoining society?

We don’t need another lockdown, but there are a lot of options that aren’t doing nothing. Masks could be required on public transport and in shops, lateral flow tests could be essential for going into offices and events, people could be paid to isolate when unwell. I’m very sympathetic to the fact that some people can’t afford to as it stands. In light of the pandemic, we need to update sick leave policies. And the end of free Covid-19 tests is going to be a disaster – people need to know whether or not they’ve got it. 

I am disabled, I am immunocompromised, I also work full-time, have a social life – why should I give any of those things up? The whole point of being in society is being there for each other and protecting each other, and this has just completely shattered any trust that I have in society.

Sophie K Rosa is a reporter for Novara Media. Her book, provisionally titled Radical Intimacy, will be published by Pluto in 2023.

To read more about disability, see Novara Media’s focus, Disability: It’s Political.

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