Sarah Spoor and her two adult sons have spent the past 14 months shielding in a one-bedroom apartment, with no garden, in west London. Her youngest sleeps in the bedroom, his brother has a pull-out bed in the kitchen, while Spoor takes the living room in another fold-out bed.
All three have complex medical conditions that leave them vulnerable to Covid, and despite the strain of living in such close quarters, they don’t feel safe leaving home any time soon.
“If we catch it, we die; it’s that simple. In the 14 months, I have probably been out about four times, and that’s usually in some dire emergency,” said Spoor, who provides round-the-clock care for her sons, 20 and 24, after their medical team decided it was too risky for their usual carers to continue visiting.
“We’re having to sleep in shifts. I’m probably having three to four hours’ broken sleep a day. It’s like a wartime situation. All we’re doing is just surviving and I’m not unique; that’s what other carers are doing.”
Spoor said she has looked on in horror as people have flooded to shops, outdoor bars and restaurants, as part of lockdown easing last week, even while case rates remain high in some parts of the country and surge testing is under way for variants.
“It’s horrific, the pandemic is not over, where did anyone get that idea from? The whole thing is madness. I just look longingly at Taiwan, China, New Zealand, Australia [where cases are low or nonexistent], I wish we could just ship out there for a couple of years.”
The family has yet to be vaccinated as their medical conditions, which include type 1 diabetes, adrenal insufficiency, pernicious anemia and thyroid failure, mean they are likely to experience a severe reaction leading to hospital admission, and they are concerned about the risk of catching Covid in hospital when cases are still prevalent.
Spoor is not alone in fearing a return to life after lockdown, with disability charity Scope estimating 75% of disabled people plan to continue shielding until after their second vaccine dose, and some for longer.
“I think there is a potential long-term impact that groups of people become squirrelled away and it’s potentially easy for governments and local authorities to forget about them,” said James Taylor, executive director of strategy and social change at Scope. “We’re really worried that, in the long-term, lots of the rights that disabled people have fought for, the visibility, the recognition of disabled people as equal, that all falling away and going backwards.”
After a year in the safety of home, many shielders are nervous about the thought of accessing busy spaces full of people. Craig Harrison, who has rheumatoid arthritis, has been shielding alone at home in Derby for a year, and thinks he will continue in some extent for another year. “It’s become normal now. I can’t imagine it changing, not until the majority of Covid has gone away. I’m not going to be queueing up outside Lidl on a Monday morning just because I can do that, it seems pointless.”
There are also concerns about disabled people being unable to participate in activities as lockdown eases due to their vulnerabilities, particularly after it was announced clinically extremely vulnerable people would be barred from the Carabao Cup final in April.
“There’s a potential risk that we end up with a bit of a two-tier society, where we go back to attitudes that were quite prevalent 10-15 years ago, where disabled people were only seen as needing to be cared for, as getting in the way, as being a vulnerable group, which is completely wrong, and not where we should be as a society,” said Taylor.
For Spoor and her sons, there’s a long road ahead before they can envision anything like the life they lived before Covid-19. “I imagine it’s probably going to be another year. [The scientific advisers] were saying we won’t go back into lockdown again, we’ll just have a few more deaths. Well, that’s going to be us. It still feels like we’re going to get it and die.”