For people classed as “clinically extremely vulnerable”, shielding officially began on 23 March last year. For me, it began some days before that. I have spinal muscular atrophy, and contracted swine flu in 2009, when I spent more than three months in hospital. I’ve been using a ventilator through a tracheotomy ever since. Were I to catch Covid-19, I’d be unlikely to survive.
Shielding must come to an end at some point. But according to recent research from Scope, three out of four disabled people – myself included – won’t be leaving our houses until we’ve had the second dose of the Covid vaccine. Recent NHS data shows that just 8.5% of clinically extremely vulnerable people have had their second dose. Although it’s only a matter of weeks until many of these people receive this jab, as of today, the government is cutting support for shielders – and effectively pulling the rug from under us.
This month, shielding packages that local authorities previously delivered will come to an end. So will the statutory sick pay or employment and support allowance that the government previously granted to shielders if they couldn’t work from home. It wasn’t a lot, but it was far better than nothing. By removing support, the government is putting many people who should still be shielding in an unenviable position, forced to chose between prioritising their health, by remaining at home, or their finances, by going back into work.
For everyone, the pandemic has been a waiting game, but this has been even more the case for disabled people. We waited for the government to reinstate the food parcels for shielders during the second and third lockdowns, and are still waiting for ministers to recognise that we have been disproportionately affected by Covid-19. Almost two in three Covid deaths have been among disabled people – something that Boris Johnson seemed reticent to acknowledge last autumn. Now, many of us are waiting for that second dose, after “clinically extremely vulnerable people” were placed fourth in the vaccine priority list.
When cases of the virus first started to be reported, I stopped commuting into London. Like many people, I thought this would be over in a matter of weeks. But weeks stretched into months, and now I can count on one hand the number of times I’ve left the house since early March 2020.
Shielding has taken a huge toll on my physical and mental health. I’ve not seen my brother, nor any friends in over a year, and have suffered from the lack of physical activity. I’m lucky to live with my parents, sister and three dogs in the countryside, which isn’t a bad place to be trapped, but days blend together when you never leave the house. Many disabled people I know stopped having their carers visit them, fearing that they could unknowingly be carriers of the virus.
This wasn’t an option for me; I need 24-hour care, and both of my parents work full time. Throughout the pandemic, my team of six carers have come in and out of my home each week. They have been extremely careful, and have informed me every time there has been the smallest chance they could have been in contact with someone who tested positive. But a lot of disabled people haven’t experienced this level of care and responsibility during the pandemic. Some have been forced to rely on family for their care, or move home after living independently.
Covid-19 is going to be part of our lives for a long time. The government recognises this: the furlough scheme has been extended until September, and ministers have drawn up a roadmap based on a gradual easing of restrictions. Yet when it comes to shielding, the government has created a cliff edge, pulling support from the most vulnerable before they can safely re-enter society. This will create significant fear for disabled people, and financial insecurity for those who don’t have the benefit of working from home. Rather than ignoring us, I’d like to see the government working with disabled people to build a roadmap out of lockdown that doesn’t put our lives at risk.
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Emma Vogelmann, who has spinal muscular atrophy, is a disability rights activist and law graduate. She is a policy adviser for Scope
This content first appear on the guardian