“When the figures first came out from the Office of National Statistics (ONS), I shared it on my Instagram and thought, ‘Oh this is definitely going to pick up and make all the major news outlets,’” says Nina Tame, a disability rights activist with 17,000 followers on Instagram.
The stats, however, didn’t make nearly the kind of impact Tame was expecting. “It’s just that feeling of, ‘Oh, well it doesn’t really matter,'” she says. “This pandemic has highlighted how disposable we’re seen as.”
On 19 June, the ONS released statistics on Covid-19 -related deaths by disability status, which showed that two-thirds of people who have died from the virus (between 2 March and 15 May) had a disability. Out of an overall 38,000 deaths, 22,500 of those were disabled people.
Tame and her friend Charlie Martin, who are both disabled, analysed the statistics and sent a statement to Novara Media, detailing “the huge number of preventable disabled deaths that have occurred in the UK during the course of this pandemic,” and highlighting the way that the government views “the disabled population as collateral damage in preserving the economy”. The failure to protect the disabled community, they wrote, is “eugenics in action”.
Along with other disability rights activists – including the group Disabled People Against Cuts (DPAC) – Tame and Martin are calling for an official inquiry into the deaths.
‘Total chaos and incompetence.’
While such an inquiry is needed in order to confirm the relative impact of different factors leading to this disproportionate death rate, the disabled community is already well aware of how the government has failed them.
Linda Burnip from DPAC attests to that fact, saying, “It’s difficult from the information that’s available to know exactly why the death rate has been so high for disabled people. But from the very start… there have been legal challenges because everything the government has done has basically been a breach of disabled people’s human rights”.
Many disabled people were missed off the government’s list of “clinically extremely vulnerable” people, meaning they were not provided with food supplies, able to get delivery slots or to receive help accessing essential medication. Nevertheless, many of these people knew their pre-existing conditions and health meant they needed to shield. “They were having to put themselves in really vulnerable situations to go out to be able to get food and essentials,” says Tame.
Meanwhile, Martin says that the government’s food delivery schemes have been “extremely chaotic” in terms of access, quality and consistency, and that government support with food provisions will be removed from the end of this month. As a result, Martin has been getting friends to deliver shopping throughout the pandemic but feels that with the easing of lockdown this will become more difficult “as there will be an assumption that it’s safe for me to go to the supermarket… That’s contrary to my doctor’s advice”.
It is unclear just how many people have died directly due to the government’s negligence in relation to the disabled community. One disabled person living with mental distress and diabetes in London starved to death during the lockdown as he was unable to get food, and disability activists say this is likely not an isolated case.
According to Burnip, about 45% of people who should have been on the shielding list were left out, meaning they did not get food parcels or priority deliveries of essential supplies. “It’s been total chaos and incompetence from the start,” she says. “There’s been no provision put in place nationally, and locally it’s very much postcode lottery as to what you get from, say, social services.”
The government’s failure to consider disabled people’s needs in its response to the pandemic also means that many have been left without the care that makes independent living possible. A shortage of care staff, PPE and tests has left many people unable to have their basic needs met – such as washing, cooking, cleaning, toileting help and administering medication.
“At the beginning of lockdown, social care just wasn’t thought about at all,” says Tame. “Disabled people had to weigh up the risks of: ‘Okay, do I have a carer come in who’s got no PPE and risk catching Covid or just go without having a carer and not be able to have a shower and have other basic needs met?’”
‘I had to leave my younger children outside alone.’
As a result of this glaring lack of support, individuals and families have often been put in impossible situations. Sarah’s* eldest son Robbie*, 17, has autism and severe learning disabilities. Robbie has hyperacusis, which means everyday sounds are experienced as pain. Since external support and care dried up with the lockdown, Sarah and her partner have struggled to physically and mentally cope, balancing the needs of Robbie and their two much younger sons.
The only workable solution so far has been the two younger children spending their days in a tent at the bottom of the garden. “Early in lockdown, my partner was ill for 36 hours and couldn’t get up,” says Sarah. “Without help, I had to leave my younger children outside alone whilst I cared for Robbie. It wasn’t a safe situation at all and it made the Cummings debacle particularly sick-making.”
Disabled people in care homes, hospitals or other institutional settings, where the virus spread quickly, were left highly vulnerable. A lot of people, including many with learning difficulties, had “‘Do not resuscitate’ notices slapped on them by their GPs without any consent from the relatives or any discussion with them,” recalls Burnip.
“It was all this sort of stuff that just sent out this really clear message about how undervalued as a community we are,” says Tame.
‘What makes so many of us vulnerable is the government’s failings.’
The government’s failure of the disabled community during the pandemic is set against ten years of austerity, which has hit disabled people the hardest. A recent survey by the Greater Manchester Disabled People’s Panel concluded that “existing structural and societal exclusion, discrimination and inequality” was the context for the pandemic having a compounded impact on disabled people. The document noted “multiple areas of disadvantage, exclusion and unnecessary risk”, including unequal access to provisions, support and information.
This discrimination manifested itself in many ways. Initially, Boris Johnson’s televised announcements didn’t have a sign language interpreter, while offers of support in the form of leaflets and posters weren’t accessible for some blind people. “People in the deaf and blind community were feeling truly isolated because they weren’t able to access the information that was coming through,” explains Tame.
Throughout the pandemic, “We’ve had to listen to people debating the worthiness of our lives,” she says. “[They’ve been using] the word ‘vulnerable’, as if we’re all about to pop our clogs at any minute… [But] in actual fact what makes so many of us vulnerable is the government’s failings towards us.”
It is as a result of these failings that disability rights activists and academics are calling for an urgent inquiry. “It needs to look at whether it was just incompetence on the part of the government, or whether it was a deliberate eugenics policy,” stresses Burnip.
‘Our lives are worth less than the economy.’
As lockdown eases, Tame explains that many in the disabled community are feeling scared and gaslit by the government’s mixed messages and the absence of support. She says that non-disabled people can show solidarity by wearing a mask “as an act of community” and by checking in with local communities, to see if anyone who is still shielding needs support.
“What’s really difficult is that it feels like we’re being told our lives are worth less than the economy,” says Martin. “I’m sure there’s a lot of thinking around this in that a lot of us can’t work, we’re on benefits, we’re not Tory voters – I’ve no doubt that a lot of this is politically motivated.”
*Identifying details have been changed to protect anonymity.
Sophie Hemery is a freelance journalist. In addition to Novara Media she writes for the Guardian, VICE, Open Democracy, CNN, Al Jazeera and Buzzfeed.