Surviving ableism in Covid Times: An Update

I wrote Surviving ableism in Covid Times right at the beginning of the pandemic - around a week after I’d begun to shield and before the government had even officially constructed, or mentioned, shielding. It was a piece of writing driven by fear - a sudden realisation that I was more vulnerable to serious illness and likely death should I catch Covid-19. I’d been seriously ill in 2018, so this new vulnerability wasn’t totally new to me, but it did demarcate me significantly from the general population in terms of how I would come to be categorised - as clinically extremely vulnerable (CEV).

While Surviving ableism in Covid Times focused on the ways in which the pandemic shored up the worst effects of disablism and ableism (see blog for definitions), and served to exacerbate the existing inequalities and oppressions in the lives of disabled people and their families, this update focuses on the more intimate experiences of shielding. Since March 2020, 127,000 British people have lost their lives to Covid-19; two thirds of these have been disabled and chronically ill people, with people of colour and people with learning disabilities being disproportionately affected (Brothers, 2020). At the time of writing this update, I had been shielding for 462 days. 

Shielding as a collective labour

Shielding quickly became a widespread practice defined by Public Health England (2020: np.) as ‘staying at home at all times and avoiding face-to-face contact’. Shielders are a vast and diverse community, including children and young people, adults of working age and older people: 2.2m people were initially clinically identified by NHS England and were advised to shield, but there are over 13.9m disabled people (Scope, 2020) and 11.9m over 65s in the UK (Age UK, 2019), meaning millions of disabled, chronically ill and older people not clinically identified have practiced shielding for their own protection - without the forms of support that come with being clinically identified. It’s also important to recognise that shielders are not only those considered vulnerable, but our partners, parents, children, carers, flatmates - those who we live with - who are required to shield themselves (and us) for shielding to be an effective life-saving practice.

Shielding precludes leaving the house, and socially distancing from others in your household, making it the most isolative experience in the current crisis. While we know about the necessity of shielding through governmental guidance, even a year later we still know little about how it feels, how people are coping, how shielding is negotiated and experienced by families, or its long term impacts (Liddiard 2020). You can read a helpful timeline of shielding here (Runswick-Cole 2020). For my family, shielding has been exhausting: working from home (relatively easy for me as an academic, much harder for my partner who had to run a hospital social work department from our dining room); not seeing any friends and family for over a year; staying inside; quarantining post; managing the stress of procuring food and supplies without being able to leave the house; routinely risk-assessing the dangers of attending hospital and other vital appointments; and relentlessly washing and bleaching all deliveries (including food shopping).

The number of times I’ve contemplated the bizarreness of shielding, and Covid-19, as I’ve sat dutifully washing up food shopping deliveries, bleaching down packets of pasta because my life now depended on it. We couldn’t get a food delivery for the first 6 weeks, meaning our cupboards were relatively bare. This is not uncommon - according to Inclusion London (2020), over 60% of disabled people have struggled to access food, medicine and necessities. Let’s not forget how this is further exacerbated by digital exclusion - a lack of access to online spaces and systems. My partner and I only went to graveyards, or the park before 8.00am for walks - empty places where we knew we wouldn’t be exposed to others.

When the new variants emerged before Christmas, I didn’t even leave the house at all until my first vaccination on 4th February 2021. We bleached door handles, switches, plugs, floors, walls, and toilets when our nephew, who lived with us at the time, had to go back into college. This was by far the hardest, yet most unspoken, part of shielding: having to socially distance even from those in your own home. Many shielding parents have had to face fines for keeping their children out of school or risk their lives every day. Shielders whose partners had to return to work have had to sleep in separate rooms and beds. Many shielders have had to not be physically close to, hug or share close airspace with those they live with, often for many months at a time. Thus, the impacts upon one’s intimacies with others has been, for me, the most indescribably difficult aspect of shielding.

Such distance has challenged even the closest of relationships. My partner and I chose not to distance from each other, but this meant shielding together in the most extreme of ways - my partner didn’t see his friends, family, or work colleagues for 462 days either. He’s also carried much of the work and stress of shielding - protecting, cleaning, scrubbing, worrying, advocating and loving - showing that shielding is undoubtedly a collective and intimate labour (see Liddiard 2018). To be at risk of death for over a year, and to change your entire life and the lives of those you love, to ask them to sacrifice their own freedoms, all in the name of your protection, is the ultimate act of love and care.

Considering the myriad impacts of shielding

Therefore, past the obvious material impacts of shielding, elsewhere my research partners and I are exploring the affective impacts of the pandemic - the emotional, ontological and psycho-political impacts of living through and beyond Covid-19 for disabled people and their families (Goodley et al. forthcoming). For me, shielding made my world smaller; I’ve also become anxious and more fearful of the world. As the months have gone by, my partner and I have felt more and more isolated, lonely and detached from our former lives.

Yet we are privileged in our shielding - a lovely house, a garden, financial security and supportive employers. Many disabled people live in unsuitable and inaccessible housing; are in precarious employment; and rely upon unstable and underfunded forms of care and support to live - all of which have been exacerbated through Covid-19 (Shakespeare et al. 2021). Being able to shield at all, bizarrely, is a privilege - many disabled people have demarcated living in constant risk through needing care in the form of PAs or outside carers.

The worry, the lack of control, the fear to assert yourself or advocate for your own safety in your own home, the lack of PPE, the fear of losing your job, income, and not being able to procure food are all the stark realities for disabled and ill people and their families. None of these have been a reality for my family, yet the emotionality of shielding has left a mark upon us that will be etched in our memories for a long time to come. 

Which way to the future?

Shielding was formally ended by the government on 31st March 2021, yet millions are still shielding as they await their second vaccinations. Many disabled and older people have not yet even had their first vaccination, despite the government claiming otherwise.

British charities also remind us that vulnerable children and young people have also been forgotten about in the vaccination roll out. We’ve also seen people with learning disabilities and their parents, carers and families fight for the right to be prioritised and vaccinated, despite the fact that even before the pandemic people with learning disabilities were dying up to 30 years earlier than their non-disabled peers and twice as likely to die from an avoidable death (NHS, 2017; LeDeR, 2019; see Goodley et al. forthcoming).

Materially, the government’s ‘conclusion’ of shielding has meant that many disabled workers have suddenly lost their rights to Statutory Sick Pay and Employment and Support Allowance for shielding, meaning many will have to put their lives at risk to return to work. At the same time, priority supermarket delivery slots are being reduced, and furlough is due to come to an end at the end of the summer. In short, shielders deserved far more governmental support than we have ever received, and now what has been available - a lifeline to many - is being stripped away before many clinically vulnerable people are fully vaccinated and protected. This only causes yet more worry, anxiety and panic for a group of people who have suffered relentlessly over the past year. 

So, where to end this update? Firstly, please remember us and the way the government has utterly failed to protect those deemed the most vulnerable in society. Secondly, recognise shielding as a worthy labour, made possible by our close networks of support and join us in our fights for better post-pandemic support. The legacies of Covid-19 will run deep for all people, but particularly those already marginalised. And most importantly of all, please remember the 127,000 people who have died - a number far higher than any other European country - when you next vote.

References

Brothers, E. (2020). Building back better – disabled people and COVID-19, Community, 3rd December 2020, Accessed 2nd February 2021.https://community-tu.org/building-back-better-disabled-people-and-covid-19/#a10287c4

Goodley D., Lawthom, R., Liddiard, K. and Runswick-Cole, K. (forthcoming) Affect, dis/ability and the pandemic, Sociology of Health and Illness

Inclusion London (2020) Abandoned, forgotten and ignored: the impact of the coronavirus pandemic on disabled people. Online at: https://www.inclusionlondon.org.uk/wp-content/uploads/2020/06/Abandoned-Forgotten-and-Ignored-Final-1.pdf 

LeDeR (2019). Annual Report. University of Bristol Nora Centre for Disability Studies. Accessed on the 13/4/2021: http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR_2019_annual_report_FINAL2.pdf

Liddiard, K (2018) The Intimate Lives of Disabled People. London and New York: Routledge (ISBN 978-1-4094-6090-9)

NHS England (2017) Intellectual Disabilities Mortality Review Programme Annual Report (2017). Available online on 13th March 2020: https://www.hqip.org.uk/wp-content/uploads/2018/05/LeDeR-annual-report-2016-2017-Final-6.pdf

Runswick-Cole, K. (2020) A (brief) history of shielding. iHuman blog. Available from: https://www.sheffield.ac.uk/ihuman/news/brief-history-shielding [accessed 13/4/2021]

Shakespeare, T.; Watson, N.; Brunner, R.; Cullingworth, J.; Hameed, S.; Scherer, N.; Pearson, C.; Reichenberger, V. (2021). Disabled People in Britain and the Impact of the COVID-19 Pandemic. Preprints 2021, 2021010563