As the Covid inquiry sheds light on incompetence and in-fighting within the government’s Covid-19 response, people around the country continue to suffer the consequences of the virus and the failings in the government’s actions. As Boris Johnson moaned “why are we destroying economy for people who will die anyway soon?” more than 230,000 people lost their lives in the UK, with a further 2 million estimated to have suffered long covid symptoms. The Office for National Statistics reported that during the first year of the pandemic 58% of those who died were Disabled people, with those described in the study as “more-disabled” more than three-times as likely to die from Covid as non-disabled people.
The lifting of the final Covid restrictions was announced in February 2022, and despite optimistic hypotheses of a ‘new normal’ when the country emerged from lockdown, life seems to have gone back to pretty much how it always was for most people. However, for some of the more than 2 million people classified as clinically extremely vulnerable to the virus who were told to shield during the period of Covid restrictions, the pandemic has never gone away.
John Clay speaks with Anusha, whose multimedia work The Burden Project “illustrates the difficulties disabled/immunocompromised people are experiencing during this ongoing pandemic”.
John: Hello Anusha, thank you for giving our publication time to cover your story and concerns which I think many will agree are worth giving a platform. Let’s get stuck in. The world seems to have moved on from the pandemic in ways which are counter to those identified as disabled.
Anusha: There’s a funny Tik Tok video that perfectly sums up what I want to say “The pandemic is not over just because you’re over it”. There has been a variant (Pirola) spotted in numerous places, which has 36 proteins – in layman’s terms, this is a mutation with the possibility to affect people in ways not known to scientists. Scientists recommend masking, testing and keeping up vaccines in order to stay safe. However, with the world willfully ignoring it it means that there’s going to be more mass disabling. There’s going to be more devastation. 1 in 10 people will develop Long Covid; these people may lose their house, their job, their relationships etc.
I have so many thoughts on this, some more harsh than others. But roughly summed up: By continuing to “ignore” the pandemic, you are risking your life and the life of others. Continuing to practise actions proposed by fascist and eugenicist governments means that you are practising eugenics. And before anyone argues:
“Eugenics is the scientifically erroneous and immoral theory of “racial improvement” and “planned breeding,” which gained popularity during the early 20th century. Eugenicists worldwide believed that they could perfect human beings and eliminate so-called social ills through genetics and heredity. They believed the use of methods such as involuntary sterilisation, segregation and social exclusion would rid society of individuals deemed by them to be unfit.” (National Human Genome Research Institute)
Accepting that disabled and immunocompromised people cannot access public life (especially medical settings, the places we visit the most) and refusing to find ways for us to live means you are taking part in eugenics.
If you don’t heed these words and are looking for instant gratification, I can’t stop you. I can’t even stop people I considered my best friends. But as long as you know that this is what you are risking. Your life and our life.
John: How has your day to day been affected by all of this?
Anusha: I have had to rebuild my life in my 4m x 5m studio apartment. Building relationships, having fun, creating art is all done within these four walls. I don’t go to the doctor unless there is a risk of medical care being taken away from me.
In order to process what is happening to me and my friends, I have to mourn my previous life. I cry about the people I’ve lost (from passing, abandonment, etc.) and the milestones that are miles away.
John: You’re a serious musician, detail for us how your medical condition has impacted that career.
Anusha: Giving up my original idea of what a music career is was hard because I’ve spent 12 years training my voice, researching songs and making music. But it means that I have had to dream bigger than I did originally. I’m messing around with recording music videos in my bedroom, perhaps a live music show (if I get the funding). And the thing I want to find is stability through music. I am going to find it. Or let it kill me.
John: Have you found other people who share your sentiments and have you organised ways and means of community support?
Anusha: People sometimes share my sentiments and there are people who will listen to what I have to say. But they leave the work to disabled people. There are very few people (within music) who are committed to Covid safety, making this space quite lonely. Or if they have been in the past, they have given up. So sharing my sentiments doesn’t matter because they rarely help immunocompromised people access spaces.
However, in the online music community I’ve found a Black collective called Black Violet Revue who support Black queer people of multiple marginalisations. And they’ve been so important to me because this group of people have helped with building confidence with performing virtually. They’re American, I don’t majorly see non-disabled British spaces prioritising Covid safety or bothering to reach out to disabled artists. The few disabled musicians/performers who are shielding are usually poor and in precarious situations therefore don’t have the energy to properly organise regular Covid safe events. CripTic Arts, The Radical Body, Together!2012 who ARE based in England have been promoting online for those who cannot attend in venues. And there are disabled led grass root organisations who are thinking about COVID safety.
That being said, I’ve been putting on online events for disabled musicians through my organisation The Passion Project (less so this year due to preserving my energy). And it’s been a learning curve, however it’s been amazing to see people still support online events to see their favourite DIY artist. Through these performances I have found a few people who are in similar situations as me; we might be making something in the future…
John: Would you say that the drive to push the narrative that the pandemic is over has quantifiable stats that can be quoted? How does one broach this subject with naysayers or are they not worthy of engagement?
Anusha: Statistics can be tricky because they have never been truly indicative of what actually is going on. How can we rely on stats when nobody is testing and reporting them? When tests aren’t readily available? When the public has been told false information that can be easily disproved by basic science? Anybody with an agenda will find statistics that support their argument and use it to push getting “back to normal”.
Recently, it was reported that the most NHS Trusts failed to report a SINGLE death amongst staff during the first two waves of Covid. I don’t need to spell out what’s going on.
Statistics can be important so we can gather what’s going on but we have had to rely on places like Zoe App, independent entities (Independent SAGE) because the government will never serve the public to keep them safe. Evidently, neither will the NHS.
The conclusion that you’ve reached regarding the NHS must have been hard to process at first, let alone continuously. It’s bound to be difficult for the majority of our readers, particularly in light of the well documented work conditions for NHS staff. Perhaps it would be prudent to detail more of your personal journey from where you were previous to late Feb/early March 2020 up until now.
I grew up knowing that institutions never serve the people, the function of an institution is to serve capital. I knew this before 2020 so it wasn’t a shock to realise that the NHS doesn’t care about life. Especially because marginalised people have been sounding the siren for years. Before 2020. I guess if you’re someone who doesn’t understand this, yes it might be a shock.
Look at the way that schools had to open back up to save the “economy”, instead of protecting the health of children and school staff. Or how Eat Out to Help Out out was for the economy – not for our health.
When you frame it like that, you realise how society functions. Therefore, you then understand why the NHS will not protect their own staff and patients. Unless it benefits capital. It’s why we need to demand better protection/precautions from COVID to “Save The NHS”. If the NHS continues to allow a disabling disease to fester; the hospital staff will leave, waiting times will rise (the waiting list is 7 million currently, highest it’s ever been in history), the NHS will succumb. By continuing to ignore the problem, the problem will make itself known.
Find out more on Anusha’s official website
Interview by John Clay: https://chemicallysinister.myportfolio.com