People with disabilities, chronic illness, long COVID, and mental health issues speak on the lifting of all restrictions, and reflect on their hopes for how the perception and treatment of illness might change in a post-pandemic world
“I know a lot about being trapped in your house because of a virus,” says 24-year-old Jessica, who is bedbound due to a neuro-immune disease she developed a decade ago. “This is not my first time being suddenly and unexpectedly plunged into a deeply distressing and unfair situation. July 19 is not ‘Freedom Day’ – freedom to me means the ability to live without having my life and wellbeing constantly threatened by the selfishness of others. For many of us, today is a day of fear and further restriction.”
Despite being condemned by 1,200 international scientists as an “unethical experiment” that poses a threat to the world – and with the number of COVID cases at a six-month high – today, after 16 months of lockdowns, the UK government has lifted all COVID-19 restrictions. This so-called ‘Freedom Day’ sees social distancing guidelines, limits on mass gatherings, and the mandatory face covering law abolished, while clubs are able to open again for the first time since the start of the pandemic – a milestone celebrated at the stroke of midnight by clubbers across the country.
Although the lifting of restrictions offers a lifeline for the struggling nightlife industry, for many people, it’s a terrifying prospect, and one that marks a return to the broken ‘normality’ we were living in before. For disabled people, those with chronic illnesses, long COVID sufferers, people struggling with mental health issues, those who lost their jobs during the pandemic, elderly people, and people who’ve lost loved ones to coronavirus, ‘Freedom Day’ doesn’t offer the same hope and elation that it does for others.
“The lack of legal protections for Clinically Extremely Vulnerable (CEV) people means that those groups are actually less free than they were throughout the strictest lockdowns,” continues Cheltenham-based Jessica. “(The lifting of all restrictions) goes against all sense and reason, in particular the removal of masks and distancing guidelines; I don’t even consider these things a form of lockdown as they don’t stop you going anywhere or doing anything, they just protect others.”
Mary, AKA @invalid__art, a disabled writer, advocate, and activist from Bristol, says ‘Freedom Day’ means the opposite for anyone vulnerable to COVID. “The name is chilling,” she tells Dazed. “Freedom for who? Certainly not for healthcare workers with burnout and PTSD; certainly not for people with blood cancer living in a block of flats who now may have to find emergency accommodation elsewhere; certainly not for the millions of people who need personal care daily and now might be killed or disabled by their carer bringing COVID in.”
New research unveiled by disability charity Scope on Friday (July 16) revealed that just two per cent of disabled people feel safe about the lifting of restrictions, while 67 per cent don’t think disabled people were even considered by the government when making this decision. Official government guidance even encourages CEV people to still take precautions, including meeting people outside, not meeting unvaccinated people, and practicing social distancing.
It’s not “Freedom Day” when millions of ill & disabled people in Britain are terrified about their survival as we have more Covid cases than any other country.— Aleesha Khaliq (@a_leesha1) July 19, 2021
This “survival of the fittest” policy is completely barbaric & is designed to kill more ill & disabled people.
“In the rush to unlock, a huge proportion of the disabled community are yet again being forgotten and left behind by the government,” James Taylor, Scope’s executive director, says. “Disabled people’s lives matter just as much as anyone else’s, and yet many are being made to feel expendable.”
Disabled people’s feeling of disposability during the pandemic sadly isn’t unique to ‘Freedom Day’. Throughout the crisis, there has been a disturbing narrative that ‘just’ the elderly and vulnerable are at risk, which Jessica says has been “very psychologically damaging”. “I have several pre-existing conditions that make me vulnerable to COVID,” she explains, “but none of them are terminal. My imminent death is not inevitable, and even if it were, I would still have a right to not have the process sped up against my will by the actions of others.”
Mary describes what’s happened during the pandemic as “a massive experience of eugenics”. “The blanket do-not-resuscitates (DNRs) applied to disabled people in care settings; the forced DNRs placed on disabled refugees; the forced DNRs placed on disabled people all across the country by their care providers such as GPs – these are wounds we don’t know how to heal.” Mary says she has turned to the vital support of the disabled community during this time, who have helped each other “learn to survive surrounded by hostility and disregard for our survival”.
“It is difficult to find the will to stay alive when the message coming from all directions, whether implicitly or explicitly, is that your life doesn’t matter and isn’t worth saving,” adds Jessica.
“Freedom for who? Certainly not for healthcare workers with burnout and PTSD; certainly not for the millions of people who need personal care daily and now might be killed or disabled by their carer bringing COVID in” – Mary, @invalid__art
For those deemed CEV by the government – based on letters sent out at the start of the pandemic – the mental implications of unlocking can be just as debilitating as the fear of the physical virus. 27-year-old Izzy* from Portsmouth received a CEV letter, but isn’t exactly sure why. “I was dealing with severe health anxiety at the start of the pandemic and the CEV letter just made it worse,” she tells Dazed. “It might be due to mental health or possibly a mild heart condition I have, but neither me nor my GP were able to figure out exactly why (I’d been deemed CEV), so I even suspect it may have been a mistake.”
Despite this, Izzy decided to shield during the pandemic – though she says living with two teachers and an essential worker made this difficult. “It’s been especially difficult for me because the way I’ve been living in lockdown is basically the same as how I get during a depressive episode,” she continues. “This whole thing has felt like one long depression that I don’t know how to climb out of.” Although she’s now fully vaccinated, Izzy says she still “can’t shake this depression and fear” and doesn’t yet “feel comfortable being around people again”, particularly as COVID cases are once again rising. “It feels like the Tories have decided that they just can’t be bothered to govern anymore,” Izzy states. “One might even call it state-sanctioned eugenics against disabled people and the working class.”
Young people’s mental health has been particularly affected by the pandemic, with recent research revealing that 80 per cent of teens and young adults reported a worsening of their mental health during lockdown. In January, another study declared that a quarter of young people have been “unable to cope with life” during the pandemic.
“The mental health consequences of the pandemic will be felt for years to come,” says Paul Farmer, the chief executive of mental health charity Mind. “Politicians shouldn’t assume that the end of restrictions will be good news for all – many people will struggle with the change. We know that a huge number of people have developed a mental health problem since the start of the pandemic, and some groups have been hit particularly hard, including young people, those on low incomes, and people from racialised communities.”
“Many thousands of people will be left with long-term impacts from this period,” Farmer continues, “whether because of bereavement, unemployment, trauma, or the weathering effect of life during lockdown. A range of support must be properly funded, from talking therapies to in-patient beds in safe and therapeutic settings, so people get the right support at the right time.”
It’s not just the mental toll of coronavirus – lockdowns, redundancies, grief – that can heighten pre-existing or newly-developed mental health issues. Those suffering with the long-lasting physical symptoms of the virus have found their lives immeasurably altered. 26-year-old Sam from Wolverhampton has been struggling with long COVID since contracting the illness in April 2020. “I was initially very poorly with COVID for a period of six weeks,” he tells Dazed, “but symptoms of coughing and fatigue have recurred since. I used to run a 5k everyday, but now I struggle on a 15-minute jog. Since COVID, I seem to be more vulnerable to infections, whereas before I was never ill.”
“When you’re confined to your home through illness, the world carries on as normal, which can feel very isolating. With the pandemic, everyone was going through the same experience, so there was a sense of togetherness that’s harder to find when you’re ill” – Jessica
Sam says lockdown and his ongoing struggle with long COVID have had a huge impact on his social anxiety. “It’s made me anxious to do the things I usually love, like eating out, visiting book and record shops, and travelling. It’s also been heightened by working from home and not seeing many people.”
“Healthiness is taken for granted,” he continues, “and the ‘Freedom Day’ government propaganda is a bit insulting to people who have died, been ill, have pre-existing conditions, or are still dealing with the mental and physical effects of the last 16 months.”
London-based Danny*, aged 30, is still suffering with long COVID despite having a “mild” infection in March last year. “I didn’t have the hallmark cough, fever, nor loss of taste and smell, but I did have chest pain and trouble breathing,” he reveals. “Over the next few weeks, my breathing issues didn’t go away, and any time I’d move around a lot or exercise, I’d be knocked out for a few days.” After several false diagnoses, and a worsening of his condition in October, Danny was finally told he had long COVID in April this year. “I have a relatively mild case compared to others,” he says, “but it’s really affected my lifestyle and mental health a huge amount. Exercise always helped me with anxiety, so being unable to do that is a pretty big blow.”
Danny adds that although he “would love for ‘Freedom Day’ to be final”, he doesn’t “understand how that could be the case given the rising numbers and the amount of young people left unvaccinated”. “The long COVID stats are really bad too,” he says. “Thousands could be getting it a day in the coming weeks.”
Clinically Extremely Vulnerable Guidance finally up on Gov website. Confirms earlier briefing. Don't mix with unvaccinated; meet outside; don't go into work if poss. This isn't Guidance, it's ministers abdicating responsibility for the 3.8m CEV, 5% of popn.https://t.co/9NntJDA9zy— SalBrinton (@SalBrinton) July 12, 2021
As well as the physical and mental health concerns surrounding this final unlocking, Jessica is sad about the prospect of lockdown’s positive changes being reversed. “A lot of things became more accessible due to being offered online,” she tells Dazed. “Plays that I previously wouldn’t have been able to watch due to the theatre not being wheelchair accessible were now available to view from the comfort of my bed. Doctors I wouldn’t have been able to travel to see were now offering telemedicine, meaning I could get the best possible care and not be limited by where I live or how able I am to travel. Even things like virtual bra fittings have been a blessing.”
“A lot of these services are being removed now that non-disabled people don’t need them anymore,” Jessica continues, “and previously weren’t offered at all despite disabled people begging for them. I found it difficult to watch students get awarded GCSEs and A-levels based on mock exams and teacher assessments when I was told this was ‘not possible’ and ‘would set an unfair precedent’. Maybe if the precedent of making accommodations for disabled people had been set, the world would have adapted much quicker to the pandemic.”
Jessica says she’ll also miss the camaraderie of lockdown. “When you’re confined to your home through illness, the world carries on as normal, which can feel very isolating. But with the pandemic, everyone was going through variations of the same experience, so there was a sense of togetherness and solidarity that is harder to find when you’re ill.”
“The last 18 months have put a huge toll on a large number of people, and it’s not just easy to go back to ‘normal’” – Sam
When it comes to learning from the pandemic, particularly when it comes to the treatment of and discussion about disabled people and those with chronic illnesses, Jessica hopes that “people have learned that health is not something to take for granted”, that “people learn how life-changing accommodations and accessibility are”, and that “people recognise how serious and life-destroying post-viral illnesses can be”.
Mary doesn’t have quite so much hope in “non-disabled people growing and learning”. “Disabled people still aren’t hired to tell their stories,” she says, “everything is told through the lens of non-disabled people and what they find palatable and interesting. Our experience of the pandemic will be sanitised, forgotten, or actively erased because it is inconvenient and depressing.” She believes that ‘Freedom Day’ is an example of “how much contempt our society and leadership have for us”.
While many will be excited to return to ‘normality’ – a capitalist system that was deeply flawed pre-pandemic, and hasn’t shown any signs of changing – countless others will be dreading today and the imminent future. Sam calls for empathy when it comes to what others feel comfortable with – many will continue to wear masks and socially distance in public spaces, and many will be forced to carry on shielding, especially as COVID cases skyrocket. “The last 18 months have put a huge toll on a large number of people,” states Sam, “and it’s not just easy to go back to ‘normal’.”
One thing’s for certain, says Izzy: “We need to take care of each other, because the government sure as hell won’t take care of us.”
*Names have been changed