If you want to know how to deal with social isolation and limited horizons, there are experts already among us explains Vida Adamczewski.
Without me even noticing, the ambit of my life has diminished to these two metres squared of bed, those four walls and two windows, these fifteen steps to the toilet and these fifteen back. Thank God, small mercies, for the anaesthetising wormhole of this laptop screen, through which – until my eyes begin to ache – I might still play at life.
It is November, 2018. COVID-19 is two years away. The streets are full, day and night, with students sloping back from the library (or the pub), with tourists, with the constant chatter and churn of people going about their normal lives. Human beings, in all their forms, rife on the streets. In all their forms, except, perhaps, the others; the ones without normal lives. The anomalies. The bedroom lurking, body burdened rest.
Chronically ill and disabled people, with conditions that necessitate prolonged rest or limit their movement and social interaction.
“But to return to the invalid. “I am in bed with influenza” – but what does that convey of the great experience; how the world has changed its shape; the tools of business grown remote; the sounds of festival become romantic like a merry-go-round heard across far fields; and friends have changed, some putting on a strange beauty, others deformed to the squatness of toads […]”Virginia Woolf in On Being Ill
I had been rendered almost totally housebound by a condition that my GP had approximated as Chronic Fatigue Syndrome. I had been inexplicably exhausted, slumped and irritable and ashen faced, since I was seventeen. Then I caught fresher’s flu. For six months, I couldn’t shake it.
I finally dragged myself to the GP, concerned that having missed every lecture and most of my classes that year, I would fail my summer exams and be forced to drop out. The blood tests indicated that at some point (maybe that year, maybe years before) I had contracted and survived both glandular fever and hepatitis C. I remember neither.
There were other incongruous goings-on in my body; fainting fits and abdominal migraines, nosebleeds, shoulders that dislocated with freak regularity. It was impossible to draw up a timeline, impossible to tell whether my fatigue was post-viral or not, impossible to give a proper diagnosis, let alone any reliable prognosis. I spent most of the next year in bed, in hospital waiting rooms, googling symptoms, avoiding my friends when they had minor sniffles, missing pub trips and politics classes, waiting for plates of food to be left outside my bedroom door, listening to the sound of retreating footsteps.
The Experts Already Among Us
Lockdown is not so strange then, for me. I have spent the last three years figuring out how to live like this.
The difference this time around is that I’m not so isolated, nor so full of guilt and shame. I have society’s permission – indeed, I have been ordered by the government – to look after myself in the way I have always needed to.
Now is the time to do away with it and forge new modes of living, to recalibrate the world according to the care incentive.
People with chronic illnesses and disabilities often spend extended periods of their lives ‘self-isolating’, for all manner of reasons. We spend another significant fraction of our lives being socially distanced (either voluntarily or, more often than not, well, not.) For years, we have been developing the internal resources to entertain ourselves with precious little input, to cope alone, to problem solve.
If you want to know how to deal with working from home, or not working at all, with studying for exams from bed with no libraries, with exercises to help conserve muscle mass now you aren’t on your feet all day, with store cupboard nutrition, with feeling ill, with loneliness, then there are experts amongst us if you care to look.
In the disabled community, there is also necessarily a profound understanding of human interdependence. We understand the importance of care and mutual assistance. And we also understand how close-quartered living and dependency can be challenging. Being disabled is frequently an experience of no privacy, of not being able get away from your parents or carers, of not being able to choose where to be or how to live.
In fact, while the able-bodied feel like their world has been brutally reduced, for many disabled people the world has opened up. The things they have been campaigning for and consistently denied on the basis of logistical difficulty, or lack of resources, or sheer inconceivability, are suddenly available. All obstacles, magically, dissolved. These changes did not result from empathy or respect for the disabled. They are designed to protect the able-bodied, and my liberation is just a side effect.
While the able-bodied feel like their world has been brutally reduced, for many disabled people the world has opened up.
For years, disabled people have been asking our prospective employers to let us work from home, to move meetings online, to permit their employees to take proper and prompt rest when we begin to get ill. We’ve been asking for online medical appointments, online prescription requests and deliveries.
I was lucky enough to have a fantastic tutor at Oxford, who clocked that I was stumbling into his classes, dazed with pain, sleep deprived, and always crying, and asked if it would help if we conducted our tutorials over the phone, on skype, or even by text. That was by no means standard practise. When I approached the disabled student support services, and jumped through all the hoops, I discovered that I would only receive government funding for assistive technologies and tools that I could prove directly influenced my academic achievement, and not for anything more holistic, nothing that would help me cope more generally.
Altering the Architecture of Society
Disabled people have been asking for decades that accessibility is built into the design of every institution and resource; not as a disruptive and botched afterthought that must be explicitly demanded on an individual basis. The responsibility for increasing access and inclusion should belong to society as a whole and not the disabled individual. After all, a characteristic like having limited mobility is not inherently harmful, or even disabling. It is only rendered a burden by how inaccessible and prejudiced our society is.
Altering the architecture of society to be more accessible would render disability as insignificant to people’s capabilities as lacking a talent for long division (which, incidentally, I also do not have). A world like that would look very different from the world we are used to living in. But it might share some characteristics the world in lockdown.
What has been long suspected, but is now made plain by how quickly these changes have been instituted in a time of global pandemic is that the only obstacle to a more accessible society, is society’s ideological reluctance to adapt.
The logistical and economic considerations that have been cited in every sorry-but-we-only-have-to-make-reasonable-accommodations-and-X-feels-unreasonable letter, in every speech, in every budget cut, are exposed now for what they are; lazy excuses, lack of imagination, thinly veiled prejudice. The NHS is so underfunded because the Conservative Party doesn’t believe that healthcare is a human right, but are savvy enough to understand that healthcare is a basic, inelastic human need, and so the profit yield from a privatised system would be massive.
Slowly and Gently
I worry I have painted a picture of lockdown as a disabled utopia, with all disabled people flourishing. This is by no means the case. For one thing, I miss the pub and the swimming pool. For another, as social care is reduced to the absolute bare minimum (and that minimum itself not being defined by the users of the service) and the NHS prioritises managing the pandemic, disabled people are being further excluded, left by the wayside, treated as more dispensable and their deaths less tragic.
For disabled people who rely heavily on other people, social distancing is an impossibility, and that increased risk of exposure, combined with that oh so sinister catchphrase ‘underlying health conditions’, is a nasty prognosis. Disabled people who have a poorer prognosis in the event that they develop COVID-19 are also being systematically denied care, so that able bodied patients with more optimistic prognoses are prioritised. Cancelling or indefinite postponement of procedures considered non-essential (which is to say without them there is no imminent risk of death) is also profoundly affecting those with disabilities. Of course, trade-offs over staff, resources and infection risk have to be made. But only because our NHS has been so ravaged.
Lockdown has also seen an absolute decimation of the usual (and usually already insufficient) support and respite care for the families of children with disabilities and special educational needs. While I welcome and hope we’ll keep many of the adaptions that COVID-19 has brought, I hope we will still resurrect the spaces that have suffered in this pandemic; the remaining community centres and youth groups, the SEN departments in schools. For these, Zoom is no substitute.
And on this day in April 2020, the toll of my phone receiving a message. It is from a school friend. Both of us have spent the morning battered by the irrational guilt that we are not doing enough. I have not volunteered my sick body to a mutual aid group, nor have I downloaded duolingo, nor have I made any serious efforts to master a headstand. And that socially comparative paranoia, that fear of missing out, is a product of the ideology that has always told the disabled that they are broken, or useless, or thick, or just plain lazy.
Now is the time to do away with it and forge new modes of living, to recalibrate the world according to the care incentive, so that mutual aid does not ebb away, to bring us closer to a world in which being a person with a disability is not so disabling.
The message, sent from one sick body to another, and now to all of you and your bodies, is this: “the people using this time to learn French are just cognitively different. The only way to move in this moment is as though you’re permanently post-viral. Very slowly and gently.”