Covid Perspectives: Those who are Disabled and Immunocompromised need to be supported, not ignored

In our Covid Perspectives series, people share experiences and thoughts in their own words. These are the opinions of the individuals themselves, not of Covid Aid. By sharing these, we aim to reflect the need for visibility and to raise the voices of the millions around the UK who continue to be severely affected by the Covid-19 pandemic.

My name is Eve. I am 20 years old, and I am Disabled and Immunocompromised, with multiple diagnoses including ME/CFS, Behcets, which requires immunosuppressants, and steroid dependency. This means that I’m considered at higher risk from COVID, and that a COVID infection could have great repercussions on my life. The last two years have been mentally, physically and emotionally exhausting, and I really just need someone to listen. I want to give people at least a chance to understand this perspective, and to understand that things need to change for all of us to be free.

The way that vulnerable people are currently being treated is nothing short of barbaric. ‘Learning to live with COVID’ has become a sugar-coated euphemism for the fact that the further illness and deaths of vulnerable people has become acceptable in return for, what? The convenience of those that assume that they are inherently more valuable than us? Because God forbid a healthy person has to wear a piece of fabric or worse, an adequately protective mask over their nose and mouth on the bus so that a vulnerable person might ride the bus too. Where is this ‘learning’? All I see is an utter refusal to adapt any part of life to make the ‘living’ portion possible. I and many other disabled individuals have had to adapt far more of our lives to our health than we’re asking the public to, and it’s somewhere between laughable and offensive to hear the cries of ‘oppression’ and ‘control’.

Our lives have been deemed disposable. Inconsequential. Worthless, and blatantly so. Every fresh piece of news on the dropping of COVID protections, the end of free testing, of the retraction of the options of remote work and education, the attempt to drop protective measures in hospital, has been another firm nail in the coffin. Our safety and survival have been trivialized. It is sickening. It’s humiliating that I, that any of us, have to beg for our safety.

We need measured, urgent changes, and we need them now. For life with some semblance of freedom for all to continue, all evidence suggests that we need:

• Free testing to continue. Nobody should be forced to pay for their safety, or to keep their friends and family safe, especially not in the current economic climate. It has been proven time and time again that those with the lowest income are the worst affected

• A roll-out of proper, up-to-date, scientific information and support for vulnerable people on caring for a Covid infection at home. I’ve had to look at guidance from other governments, including Scotland, to get any semblance of adequate advice. It’s shameful. The government website is an inaccessible, stressful maze full of loops, made to prevent access to any sort of information.

• Testing before hospital and doctors appointments to be requested, and masks to be mandatory and enforced EVERYWHERE in hospitals. Going to receive healthcare shouldn’t carry the risk of making us even sicker.

• Clinically Extremely Vulnerable  [CEV] status to be taken on arrival at A&E etc. and a separate, safer place where at-risk patients can wait and receive care. Proper ventilation in hospitals is also a proven must.

• ‘Quiet’ times for businesses such as supermarkets and all places that are considered everyday essentials for general quality of life – should be encouraged: these would be time periods where masks are mandatory, and vulnerable people can get things done safely.

• Businesses and schools should be required to offer alternative working-from-home options, and no vulnerable child or their parents should be penalised or punished for a lack of in-person attendance. This should be in place anyway, pandemic or not, and should always have been. The disabled and chronically ill communities have been fighting for this on an individual basis for years.

• Equal protections (vaccines etc.) for the carers and immediate family of disabled and vulnerable people, because they serve as our main contact with the ‘outside world’, and function as an extension of our own immune system.

• Masking enforced on AT LEAST some public transport. Disabled and vulnerable people have no choice but to travel for essentials, and many are forced to rely on public transport.

• Public education on the realities of Covid. This would help adults better understand why they should continue to care about preventing the spread of a potentially fatal virus to others.

• A much faster, more urgent uptake on preventative and protective drugs such as Evusheld and Enovid nasal spray. There are resources out there, that other countries are far ahead of us in investing in and distributing, that our government has simply refused to acknowledge. CEV people are paying large amounts out of pocket to have some vague chance at protection, because we have no other choice.

• As much focus on the health standards of clean air in hospitals and schools as we have on clean water. We have accepted for decades that viruses can be transmitted easily through dirty water, and we know that COVID is airborne. We have the technology, we know how effective clean air can be in keeping everyone safe. Again, the question is no longer how, but when.

I wake up most days feeling hopeless and on edge. I only leave the house for hospital and doctors’ appointments. I have suspended my studies on the university education that I have been working towards since I was a little girl. My entire future, my hopes of further education, of employment and a career in the creative sector, have been stunted. I don’t see my friends. My world is my house, and occasionally hospital. I battle a deep, aching fear every single day. I battle intrusive thoughts built of justified trauma, of dying alone in hospital without my mum holding my hand, of losing my mum - my biggest support and my full-time carer - and of becoming so much sicker than I am now. I suffer from several disabilities, some of them energy-limiting conditions, and the prospect of any added chronic fatigue is terrifying. I don’t sleep much anymore. It never, ever goes away. As one of the many people in my community with more than four chronic illnesses, everything is uncertain, and I no longer have much hope for any meaningful future. Every time I raise my hopes and feel a little stronger, something changes, and I’m back where I started.

A survey conducted in 2020 by the Office for National Statistics [ONS] found that disabled people made up 59.5% of all deaths involving Covid. I have not yet been able to find more recent data, suggesting that this issue is now being ignored, as are Covid deaths in general.

Covid has been characterised (and rightly so) as a ‘Mass Disabling Event’, by disability justice advocate, Imani Barbarin. To see people, especially in government and the media, baffled over a collapsing economy, whilst ignoring the blatant cause - that the country is rapidly losing its workforce to death or profound disability - is almost laughable. Although, again, recent research is lacking, in 2020 the Office for National Statistics found that disabled people were moving out of work at nearly twice the rate of non-disabled people. Many of us have worked so, so hard to achieve and maintain careers, and to be made to choose between livelihood and safety is a choice I wouldn’t wish on anyone.

I’m so tired of us having to make this silent sacrifice for the ungrateful: a sacrifice we never agreed to make and one that goes unrecognised. There is no tribute to those of us that have given up lives, livelihoods and health. There is no recognition of the mass grieving that we and our families have to endure, and no support for them when we die. It feels like mass murder within my community - and our government, our society, the world around us, is OK with that. 

There has been no recognition of the impact this has had on the mental health of the CEV and disabled. We are angry, grieving and traumatised. Most of us have never had to handle emotions like this before, and there is little to no support even within the crumbling mental health services because they don’t know how to deal with it either. Many are told that their fears are overblown or irrational, despite the evidence we see every day. Many are told to just ‘stop worrying’ and ‘get back out there’ as if this is some form of agoraphobia and not a genuine fear of a deadly virus that is more prevalent now than it has ever been. Personally, I’ve been left half-questioning my own sanity and feeling as though I’m living in an alternate reality to those around me: the dissonance is disturbing. It is sickening to see how little value our lives truly hold.

'We don’t expect the world to grind to a halt for us, but we do expect basic respect'

The latest analysis by the ONS noted that the NHS identified approximately 2.2 million people as being Clinically Extremely Vulnerable by clinical condition or clinician review. We are not a small minority by any means. Those that come under this umbrella vary drastically, from people with multiple severe disabilities, to those on steroid treatments who otherwise appear healthy. We are not simply the old and weak, as society seems to believe. We are people who had jobs and lives, who have contributed to society. The same analysis found that 31% of people who are shielding experienced a reduced level of medical care, and one in ten people did not receive care at all. The longer this goes on, the worse the fallout will be. Personally, my physical health has suffered greatly because of the reduced care and the strain on the system, and I’m definitely not the only one.

I don’t want people to have to go back into lockdown again: that isn’t what any of us want. But surely there should be some compromise? Disabled and vulnerable people have lost their basic human rights to safe education, work and healthcare. We’ve received no compensation or compassion for what we have been through, and are still going through. Just like everyone else in society, we have lives, aspirations, and careers: we don’t expect the world to grind to a halt for us, but we do expect basic respect, to be allowed to live without the constant threat and fear of further illness and potential death, and without the constant reminder that we matter less than the comfort and convenience of others.

I’m disgusted by the double standards set for this supposedly ‘post-pandemic’ society. The demands for the ending of protective restrictions are  all based on ‘freedom of ‘rights’, how everyone is ‘sick of being trapped’, and how mental health has been affected. Yet, even in the latest lifting of free testing for all, vulnerable people are excluded from this completely. People are only to test if visiting us, as though we never need or want to leave the houses that have become our prisons, as if the strangers around you couldn’t possibly be vulnerable, as if we couldn’t possibly have lives and want the same quality of life as everyone else. Meanwhile, as our access to everyday life decreases, so too does access to online events and resources, work and education, which had in the past two years become a little piece of hope - for both the vulnerable and for those who are housebound due to mental health issues. Not only are those of us with multiple disabilities handed what feels like a pending death sentence or a prison sentence with no end date, but we have no option to improve our quality of life in the meantime.

I find it deeply disingenuous that, despite cases rising dramatically, despite certain sectors like travel grinding to a halt because everyone is off sick with Covid, despite all the evidence, the government and the media are still somehow insisting that we are ‘Post-Pandemic’. To watch government officials congratulate each other for a ‘job well done’, while those of us still affected scream into the void for some semblance of help, is beyond sickening. Hospitals are reporting more of a burden on the system than ever, infection rates are higher than they’ve been in eighteen months, new, more infectious and immune evasive variants are on the rise and yet those in power would rather protect their ego than admit that they are wrong. The continued spread of misinformation, such as ‘raised immunity’ from previous infections (where it has been observed to increase risk of hospitalisation and death with each infection) needs to stop, and it needs to stop now. The public deserve to be made aware of what we’re up against. We don’t need fearmongering either, we just need straightforward, honest information made widely available.

'How it makes sense to rest the burden of testing on the vulnerable alone?'

On the subject of testing, I’d like to know how it makes sense to rest the burden of testing on the vulnerable alone? Throughout the pandemic and especially now, we have predominantly had to isolate ourselves, and therefore we are certainly not the biggest perpetrators of spreading the virus, especially not with the same reckless abandon as some. If we need to test, the assumption can be made that it might be too late already- the virus has already reached the people that needed to be protected from it most. There is no longer a buffer of prevention, only the vague sticky-plaster of knowledge after the fact. Having said that, as new variants rise, the effectiveness of using LFTs to diagnose an infection quickly enough is being called into question. Even the leaflet that comes with every box of tests says that they should not be used to determine whether or not you actually have COVID, and their initial use was to check regularly for asymptomatic infections. Even so, most people are only testing once when they become sick, get a negative result and never test again during that period.

It has been made clear to those of us eligible for treatment that the antivirals must be administered within five days of symptom onset, but many are reporting that it is taking between five to eight days for an infected person to register as positive on Lateral Flow tests. Not too long ago we were promised access to swift, accurate PCR testing, which is the best way to diagnose an infection. After barely a month, this too was withdrawn, although many of us were not notified until much later that it had been. Without PCR testing there is no real, trustworthy way to ensure that a CEV person with COVID can receive the treatment they need in time. Even then, roll-out of treatment has been anecdotally patchy and inconsistent, with very sick people and their families having to chase it up for days on end, which can be horrendously stressful.

Not only that, but even essential outings like hospital visits are now high-risk, as there is no guarantee that the non-vulnerable patients around us, or those that have been in the room before us, are not infected. There is still not enough emphasis being placed on the importance of clean air, and despite being told that we can request that our doctors and nurses wear masks when we get there, the response some have received has been rude, mocking and off-putting, with even those supposedly in charge of keeping us safe insistent that we’re simply being dramatic, and that the pandemic is over. This means that not only the patients but also the hospital staff  themselves are being put at more risk than ever, and that our right to safe healthcare is compromised. 

Further, there has been, and still is, such a heavy burden on the NHS that those with serious and long-term health conditions have been left without adequate support and care. This includes those with cancer (who are also immunocompromised/supressed), patients waiting for various diagnoses and those who have had covid and are now struggling with new and difficult long-term health issues. People have quite literally died waiting while our hospitals are flooded with Covid cases that could have been prevented or at the very least reduced via protective measures. This is completely, utterly unacceptable. 

'The M.E. community has watched Long Covid patients become the new victims of everything that we’ve desperately tried to overcome'

As someone with M.E., I’d also like to mention the heart-breaking way some people with Long Covid are being treated. M.E. (Myalgic Encephalomyelitis) has a very painful history of mistreatment, from shoddy treatments to claims that it is nothing more than psychosomatic. Our community has fought for many, many years for justice and compassion - only last year, the controversial, highly destructive practice of Graded Exercise Therapy was removed from the NICE treatment guidelines after causing great harm to many patients who went ignored or were blamed for the degradation of their condition, and told they weren’t working hard enough. Over the last few years, we’ve watched Long Covid patients become the new victims of everything that we’ve desperately tried to overcome. They’re told that an increase of exercise will help them, that meditation and CBT will cure them, that it’s all just a manifestation of their anxiety. Most are never made aware of conditions such as M.E. or POTS (Postural Orthostatic Tachycardia Syndrome), which have indisputably close links. Post-viral illness has never been ‘unprecedented’. We’ve always been here. But admitting that now would mean admitting that we have always been neglected and abandoned, and that they should have been doing something more all along.

Unfortunately, I know that I am in a minority. I know that the damage the government has done to the public perception of this pandemic is already far too great, that people consider it to be little more than a common cold: they choose to look away from what makes them uncomfortable and want to move on from unpleasant times. People celebrate their freedom, understandably. They don’t want the inconvenience of tests, and they certainly won’t use them if it means paying for them individually, especially considering the current economic crisis. Many don’t want the inconvenience and discomfort of thinking about the consequences their actions could have on other people. Everyone just wants to move on.

What a great waste of two years this is. The blatant, rampant and open ableism that I see being encouraged by the government has been agonising, and I know that it is far too late to remedy it. But I do want people to see it. There are new, deadlier waves coming and we are not in a position to handle it. But we could be. It just takes a few changes, a few adaptations and just a little more compassion.

My Grandad, David Dolan, received an MBE for Services to the Disabled and Disadvantaged. He passed away from cancer before the pandemic hit, but I owe it to him to fight for this. I owe it to myself. If nothing else, I want my legacy to be one of defiance against injustice, to be one I can be proud of. I won’t be forgotten. I refuse to be just another ‘unfortunate’ number in this country’s shameful death toll. We won’t be ignored, we won’t shut up and we certainly won’t die quietly.

The Universal Declaration of Human Rights is clear: every member of society has the right to the ‘economic, social and cultural rights indispensable for their dignity’ (Article 22). Everyone has the ‘right to a standard of living adequate for their health and well-being’: this includes ‘medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, [...] or any other lack of livelihood in circumstances beyond their control’ (Article 25).

Article 26 states that ‘Everyone has the right to education’ yet I, and many others in my situation continue to be deprived of that right. As regards the duty of others, Article 29 reminds them that ‘Everyone has duties to their community’.

We, the Clinically Vulnerable, are entitled to these rights too. Unsafe access is not access. We are part of the human race: in making our world unfit for us and our access to healthcare, education and work unsafe, society and our government devalues us. We deserve our rights.