A Pandemic State of Being: autistic reflections

One of the scariest things, I find is not remembering how you felt towards something. As an autistic person, emotion acts as something of an anchor, reminding me of times or experiences. If, for instance, you asked me to describe my last gathering with friends before the first lockdown, I could perhaps sketch out the rough details of what happened but at this point I’m just liable to say ‘It felt relieving’. In moments when nothing seems wrong, its very difficult to believe that anything is wrong, even in spite of all the news stories telling us that yes, something was indeed wrong. memories of how I felt upon a specific date or event help me to tether myself to specific memories or experiences.

I can tell you how I felt upon the second lockdown, as that happened after a period of relative stability. To have my once again thrown into uncertainty sent me into a temporary period of burnout and exhaustion. Coupled with the unceasingly bleak media coverage, the anxiety that I—and many other autistic people -live with, had peaked. Still, its for precisely that reason that I don’t remember how I felt upon the first lockdown. Did I feel the same way as I felt upon the second, and just forgot? If thats the case then that’s even more concerning, but my memory associated with particularly strong emotions means I somewhat doubt that. A far more likely reason is that the initial ‘novelty’ of the pandemic meant that I was bewildered by the whole experience. None of us were in control and thus any strong emotions or opinions we could have towards the virus were futile. For something like a lockdown to happen once in the life of an autistic person results in a deep and profound sense of uncertainty. For it to happen more than once results in the anxiety of going backwards after some sense of certainty has been reestablished.

On the emotional toll…

In my blog on the process of “social grief” I tried to present issues which lead to mass death and suffering in terms of an understanding of mental health, but there’s another concept that’s useful here – trauma. I want to refrain from saying that we are necessarily living through the first trauma event in several decades. Looking at events like Grenfell and reports of climate disaster flooding in from across several continents, its understandable that even people not directly affected by these could have some trauma associated with knowing that these kind of disasters could easily reach thier door. That said, Covid-19 is a unique case in that while it doesn’t effect all communities with the same level of severity, as a highly transmissible virus its experienced with a degree of universality.

The UK Trauma council have an interesting definition for the state of trauma, arguing that is should be understood as a disturbance in the process of “meaning making”. So to speak, when an event comes along which overturns the way you see yourself and the world around you, that disturbs your orienting systems which allow you to interpret your experiences. For example, before the pandemic was officially declared many people – including myself – wrongly assigned little meaning or significance to covid, partly because it was difficult to imagine anything fundamental changing in our lives. The UK Trauma council argue that “Through meaning making, individuals  restore a sense of the world as meaningful and their own lives as worthwhile”. This might be why elements such as routine have been so important in giving people a sense of stability.

Even the most simple changes to our lives can result in trauma. The identity of lots of people on the spectrum in particular is tied up in our ways of going about things, in our social circles and routines. The first lockdown felt like more of a slow burn, everyone knew it was coming and no one expected it to last as long as it did. Being unexpectedly forced back into not seeing anyone for a few months caused many people significant stress. Unexpected events deplete our mental resilience and if nothing fills the gap to help explain to yourself the usefulness of your life, then that can kick of a cycle of mental ill health, making you less able to adapt to changes.

I appreciate this is all slightly abstract so let’s look at some more concrete, albeit bleak, examples. Most obviously, the reports of death and illness emanating from the news each night are not doing our mental health any favours and can lead to a process known as “vicarious traumatisation”. A survey of psychotherapists who had heard about traumatic pandemic experiences found that 15% had experienced “high levels” of this kind of ‘trauma by absorption’. On top of that, the usual rituals of mourning and reconciliation – meeting with loved ones etc. – which follow traumatic events, have been restricted and made to feel different.

“the evidence is clear that communal gatherings and social networks are essential for adequate recovery. With Covid-19, though, meeting other people is precisely what spreads the virus. The treatment for mass trauma in one case is the problem in ours”

BBC Future, How to heal the ‘mass trauma’ of Covid-19

That the threat is invisible is part of the issue. It means that ordinary environments, even one we have positive memories associated with, get reframed as dangerous places where the virus can spread and mutate. Going back to the anchoring effect I was talking about earlier, whereby people like me can feel a certain sense of stability associated with a specific place, this is especially frightening. Speaking as someone who see’s even small events in quite huge, systemic terms, I’m scared as to how I will view the world in the aftermath of the pandemic. Autistic people especially, could use those narratives built up over the course of the pandemic – “we never know what to expect, the world is unsafe, our leaders aren’t looking after us” – to develop quite a scary view of thier surroundings. Hopefully you can see how all this meets the definition of what we might call “collective trauma”.

Healing and the peril of forgetting…

In psychology, things like everyday ‘rituals’ and shared social spaces are called “the basic tissues of social life”. Of course, the pandemic does present opportunities for us to reform in digital spaces for instance, but also presents the risk of damaging the wellbeing and sense of psychological safety that comes from our communities. However, the fact that we have all experienced the pandemic in one way or another means that it is linked to a group identity, as are the narratives about “when this is all over”. A collectives relationship with trauma, according to psychologists like Gilad Hirschberger, helps people to overcome, transcend and move past what they have been through.

This raises an important issue – perhaps in the aftermath of the pandemic the way we talk about it should focus on celebrating the fact that its over, and mourning for all those we’ve lost, because that implies that we’d be remembering the experience. This might seem like a strange thing to point out but I genuinely think there is danger in putting coronavirus behind us in our memories. Covid is often compared to the 1918 influenza pandemic, but only one country instituted a national memorial process – and that country was New Zealand. I don’t know if there’s any link there between how they reacted to that pandemic, and how they’ve behaved in this one, but the idea that there could be provides us with an interesting thought experiment.

“Initially, AIDS seemed to single out gay men and other so-called ‘at-risk groups’, such as Haitians and heroin users. As churches refused to bury victims and schools barred haemophiliacs infected with the virus through contaminated blood products, it is unsurprising that the shame and grief of friends and family members quickly turned to anger and demands for political change. By contrast, even when the Spanish flu mutated into a virulent killer in the autumn of 1918, most of the deaths were compressed into a short four-week period, with the mortality falling on a wide cross-section of society. Cutting across social, sexual and ethnic lines, it did not become a vehicle for stigma or a motor for outrage”

Mark Honigsbaum, Why the 1918 Spanish flu defied both memory and imagination

Obviously the impact of WWI immediately preceding the 1918 pandemic can’t be ignored, but I don’t think its as simple as that. Why is it you don’t hear anyone talk about the 1957 influenza pandemic or even the 2002 SARS outbreak? Perhaps there’s a lesson here about how we talk about pandemics. As I’ve pointed out, in the sense of wanting to come together after the pandemic, its useful to think about the situation affecting all of us equally. In some senses it has, but in other senses it hasn’t. You just need to take a cursory glance through some of my blogs to see that there’s been outrage about people with learning difficulties not being prioritized by the vaccine despite the significantly higher death rate amongst people in that group. This has been accompanied by multiple other injustices against autisitc and disabled people, which I’m not going to revisit here. Making meaning of pandemic trauma is difficult because disease deaths simply aren’t as “narrativized”. HIV/AIDS was painted in a narrative-based because it initially appeared to effect a specific group, so was siezed upon by different sides in a larger political battle. However, pandemics are rarely framed by the media, in such political terms. Do they have an aim? Who is the enemy? What’s the cautionary tale?

Without answers to these questions, there’s a risk that this pandemic could shrink to the backgrounds of peoples memories like past ones did, and I think its important that we do remember. Outside of the obvious – and highly politicized – idea that not commemorating may affect our preparedness for future crises, it is important we posses those channels for trauma and catharsis. Art, memorials, activism on the issues the virus has highlighted and public gatherings tinged with the memory of the pandemic, will be central in understanding our own emotions and making a difference for the future.

An Atypical Perspective…

Speaking as someone who considers themselves highly emotional and motivated by emotion, Covid-19 is somewhat traumatic for me. I imagine it must be immeasurably traumatic for those who have experienced the pandemic in more adverse ways than I have. In the spirit of meaning making, we will all – autistic or non autistic – have to work hard to rebuild our routines, our relationships with loved ones and our ways of thinking about the world in a positive light. This will end, however it is likely that our ways of thinking about the world have been coloured and changed, probably permanently. I’m sure you’ve seen me say in the past that I will think twice before taking anything for granted ever again. Just because the past year has left an imprint on our minds, dosent mean we can’t use that to safeguard our own wellbeing and to shape a better future, for all of us.

Systemic Neglect: On the devaluing of disability during the pandemic

Its rare that I address social issues head on in this blog and I will be doing more than just bringing the news up but I hope you understand that I’ve always tried to emphasize that the lives of autistic or ‘disabled’ individuals is no less important than that of anyone else, no matter how much they are maligned or even discriminated against. I couldn’t stay silent on this…

In the UK, people with learning difficulties have been given do not resuscitate orders during the pandemic. This has continued despite The Care quality Commission warning in December that these notices caused avoidable deaths in people with learning difficulties last year. To clarify, these notices are intended and should only be used on people who are too frail to benefit from CPR, or absolutely cannot be resuscitated. This does not include anyone and everyone with a disability. The charity Mencap even say that they have received correspondence from people with learning difficulties who have been told that they would not be resuscitated if taken ill with Covid-19! Worst of all, the same organization say that these seem to have been issued for some, simply because they have a learning disability.

This underlines the way we see learning difficulties in this country. We see them in terms of ‘frailty’. We think because someone struggles to interact properly, they must therefore struggle with everything. How terrified and angry would you feel if in the middle of a global pandemic you were told that if you succumb to life threatening levels of illness, you will not be revived? Now put yourself in the shoes as someone with a learning difficulty. Even I as an autistic person feel less safe and cared for by my own government, as a result of this news. This news shows criminal failure to look at the nuances – ‘if you’re disabled, that means your too weak to deserve treatment that could save your life’. No questions asked. I wish I could say this was a few bad cases but sadly this has occurred against a background of fatal discriminations against people with learning difficulties throughout the pandemic…

A culture of systemic neglect…

To illuminate the scale of this problem, we just need to look at the statistics. NHS numbers released last week show that since the third lockdown started, the coronavirus accounted for 65% of deaths of people with learning difficulties. Whatsmore, your more likely to die from the disease at a young age if you have a learning disability, with those aged 18 to 34, 30 times more likely to die than others the same age. Looking at disability more broadly, an analysis by the Office for National Statistics estimated that six in ten Covid deaths were of disabled people.

These statistics are of course disgusting, but the causes are all too apparent. First, the way the vaccine has been rolled out. In my end of year review for 2020 I praised the news of the vaccine as ‘amazing’ which of course it still is but I’m slow to praise the rollout as a unique national effort of complete brilliance. Much has been asked in particular about why people with learning disabilities are not on the priority list for the vaccine, when the figures are so staggering. Although some people, such as those with downs syndrome are in the top four groups to receive the vaccine, many are still waiting. This is in spite of the fact that research from the University of Bristol conducted before Covid found that on average, people with learning difficulties were dying 16 years earlier than people in the general population. This gap in the vaccine rollout to me speaks to two elements: a lack of knowledge about learning disability issues – we’ll get to that, and the fact that in focusing solely on the factors of age and severity, other factors like the environments people live in, were presumably not considered. I’m not saying that we shouldn’t have focused on younger people with learning difficulties – however, through simplistic, non complex ideas of how to roll out the vaccine, a vulnerable group of people faded into the background.

‘People with a learning disability have long been forgotten and discriminated against, and never more so than in this crisis…Ultimately the medical approach to the priority list is flawed and fails to consider a host of social, economic and health inequalities.’

Dan Scorcer, Head of Policy at Mencap

One of the inequalities that Scorcer is describing here is how hard it can be to communicate across quite rigid ways of thinking about who deserves the vaccine. This can be something as simple as being high priority from a purely technical point of view, but your GP not having precise details of your condition on record. This is something most disabled people have experienced in some form. There comes a point when your requesting support or benefits when you’ll likely need to phone your doctor and ask for confirmation on exact details on how your condition effects you, only to find that those records have been lost or don’t exist. Imagine that level of bureaucracy applied to a life or death scenario. Equally, if you catch Covid and struggle to communicate your symptoms without the help of a support worker, that might be just as threatening.

On top of that, many individuals with learning difficulties, whether told to isolate or not, have been completely cut off from society since March. Understandably, this has greatly affected thier mental health. I know as someone who is autistic that I rely greatly on my support networks and friends. This isolation mixed with the danger posed to people with learning difficulties by the pandemic, is a particularly toxic combination.

One of the biggest factors causing the higher death rate among people with learning difficulties is the care homes and often very small and crowded facilities disabled people are forced into living in. Psychiatrists like Dr Keri-Michèle Lodge point to the discrepancy in the fact that older people living in care homes were prioritized for vaccination, while people living in a similar settings were ignored. This is a core example of what I mean when I describe systemic neglect; these facilities often act as ‘storage functions’ for individuals who are deemed unable to be part of thier communities, often as a result of resource and support based neglect at a government level. During a pandemic, the level of support available to people living in those settings is cut, isolating and alienating them; Being crowded and small, Covid-19 spreads easily within these settings, creating a crisis that the individuals living within are even denied the vaccine for. If they end up contracting Covid, some of them risk being given do not resuscitate notices, devaluing their life even further.

Where this comes from…

We can’t view any of these problems in isolation. While the figures I’ve mentioned here are deeply unpleasant truths, from my perspective I can’t say that I’m all that surprised. When people talk about ‘Covid recovery’ they tend to think of it purely in terms of ending the pandemic when in meaningful terms it should include solving the issues that have been exacerbated by the current crises. The assertion that you saw in some memes and by some commentators, especially at the start of the pandemic, that only certain ‘vulnerable’ sections of society are affected seriously by the virus, works in practice as a call to “get back to normal” without solving the issues which increased the suffering of these communities.

One of these issues has to be the gap in social care. The vaccine prioritization question has highlighted how disabled people are very much left out of conversations around this issue. To illustrate this, consider the fact that the National Institute for Health and Care Excellence issued a clarification about people with a learning disability only after publishing guidance on using who may is appropriate for critical care. That was a huge mistake. In 2018 to 2019, 293,000 people aged 18-64 received council-funded social care in England, mostly at home, with 70% of them needing it because of learning difficulties. Currently, these younger adults account for around a third of all those receiving social care, and around half of all local authority social care spending. Considering this, its absolutely bizarre that disabled people have become something of an afterthought!

On top of that, we must improve standards of care and make it easier for autistic and disabled people to become part of thier communities. Last year, the CQC pointed to poor standards of care as a problem which exists in some hospitals. This can span from some staff not knowing how to speak to patients to issues stemming from under-resourcing. The shortage of specialist nurses is among the serious gaps in the NHS workforce. In a wider sense, benefits freezes and cuts to local services such as libraries have made it harder for people with additional needs to participate in social life.  In 2020, a review of 50 people with a learning disability whose death had been attributed to covid-19 highlighted how many of them had mobility impairments, and/or mental health needs. The author suggested that these factors may lead to an increased risk of covid-19—because of these people’s need for regular and sustained contact for support. The author of this study noted that: “these characteristics underpin prejudicial attitudes towards care, treatment and judgements about ceilings of care”.

The struggles around mental health and grief may be particularly prominent for people with a learning disabilities who now having the little autonomy some of them already have removed. Loss of contact with the outside world, an end to outreach work, struggles with employment. All of these are problems which existed before the pandemic. To neurodiversity activists the message is simple – if its a problem now, it will still be a problem after the virus is gone! On the issue of mental health, rather than trying to set up systems of care and support, individuals with learning disabilities are often inappropriately prescribed medication to control so called “challenging behaviour.” Similarly, people in ‘formal’ inpatient mental health settings are at risk of other restrictive practices, like physical restraint. Still, the pandemic has led to limits on visits by family and friends, heightening risk of abusive environments being created.

It can be said that the isolation and mental challenges that come with Covid are what many people with learning disabilities experience every day. What does getting back to normal mean, for instance, for someone living in an institutionalized environment? In my view, part of the response to the pandemic has to be not only lifting those who are disproportionately affected out of thier situation, but lifting up those who were left out of society to begin with.

An Atypical Perspective…

All of the elements I’ve pointed to across this blog post relate to how we value the lives of people with learning disabilities. In telling them that they won’t be resuscitated, in not prioritizing them for vaccines in spite of the evidence, in cramming them into isolating social care sessions, we are sending out a very clear message: you don’t belong. In that sense, part of all of this has to include combating narratives about who gets to be a member of society. We assume disabled people can’t be part of thier communities or are to frail to receive life saving treatment. With these ignorance’s existing in multiple areas of life, and at multiple layers of governance, we ‘disable’ people, cutting out thier means of support and creating a self-fulfilling image of these individuals: unsociable, constrained, withdrawn. That’s what’s meant by systemic neglect. Covid-19 has highlighted these issues starkly and frighteningly. Now we must respond by breaking the ableist cycle, and doing away with the stigma.

Uncertain Transitions: On the prospect of a second wave

I try and use this blog as a useful resource and not as a platform to vent , but as my country seems to gear up for a second wave of covid 19, I need to vent. Let me devote this next paragraph to that activity *breathes in*:

“What on earth was that last week? Here I am trying to create the mental energy to deal with these already stressful times and I get bombarded with anxiety. Upon finding out my area was going into lockdown, I was thrown into doubt about my work routine – something thats been keeping me sane for the past few weeks. Despite reaching a compromise over that, I’m still not sure which family members I’m going to get to see and when! Do we expect these restrictions to carry over into Christmas? Can we expect another national lockdown? More local lockdowns? This was the week when the stark reality of our uncertain future was thrown starkly into the light, and if the mixed messages are anything to go by, nobody, especially not the politicians have a clue what happens next!”

*breathes out* ah, that’s better. All joking aside my frustration does have a serious side. The prospect of a second wave is not something anyone is looking forward to having to deal with and anyone would understand the frustration many feel at having to suddenly revert to a lockdown way of behaving, or at least prepare for that possibility.

That may be why the nuances surrounding the implications of a second wave seem more apparent this time around. Maybe its to do with the frustration people feel at already having been through so much, and a mistrust of those who are supposed to be guiding us through? That’s not to downplay the seriousness of the coronavirus. It is very serious and requires us all to be vigilant bur we gain nothing by treating peoples frustrations as if they’re whining complaints, secondary to the ‘national effort’.

This blog post will address some of those anxieties from an autistic perspective, and asks how we can resolve them in a responsible way.

Autistic transitions

We tend to think about transitions as huge moments when someone’s life changes. While its true that those changes can impact autisitc people in adverse ways, we make transitions everyday.

Picture the scene: I’m going for a walk in the park . I take a cursory glance at social media which is a mistake under most circumstances, and see that my area has gone into lockdown. My mood immediately drops from pleasant to mortified. I negotiate with work, I tell them about my wellbeing needs and I agree to come in for about two days a week. I consider still seeing my family on the basis that I live with them.half the time. That said, I promise myself to stop socializing outside of those settings. After a serious and sombre message from the prime minister, my mind takes on a significantly more negative tone. Fully expecting to be met with a fearful and quiet atmosphere the next day, my mood heading into work is one of dejection. After I come into work I am surprised to find weirdly busy atmosphere, and relieved to see that people share my frustrations with trying to balance personal wellbeing and collective responsibility for keeping others safe.

This is an abridged version of how volatile my emotions can be when confronted with a combination of sudden changes and uncertainty. I’m not looking for sympathy but perhaps empathy. On Monday night halfway through writing a piece for my music blog I gave up the task and sobbed. I’ve described before how I’m quite emotionally vulnerable anyway but in that moment everything that had been weighing on me, finally made me temporarily collapse. For the past few days I’ve been carrying around a sensation which is hard to describe, but feels like an emotional heaviness. I’m going through a process of autistic burnout.

To anyone reading this who might be going through something similar, its okay to feel this way. In recent weeks more and more disscussion has focussed on the imposing of local lockdowns and second waves. For many of us who enjoy company and like to have routines in place which involve going places and being active, these are scary times. For many, including myself, a sense of safety as well as sensory stimulation and happiness was being built up through those routines, which we were already devoting effort and mental energy in integrating in to.

Now that things are getting bad again, we are being asked to transition to a new structure, and new way of thinking whereby we might not be getting that person to person interaction with friends or family members that so many of us need. This rightly makes us feel uneasy or even wanting to push back against the change. As an aside to that the uncertainty – the increased fear that things might change further, or that we might be plunged back into lockdown, makes preparing mentally and trying to plan out events in your head near impossible. As it currently stands, not too much of my post lockdown routine has changed, but the worry induced by still being in an uncertain position has caused me great amounts of anxiety.

The one piece of advice I can give for those feeling similar is to remind yourself of the temporality of the situation. Autistic people especially will be working particularly hard to mask how thier feeling, yet we can’t do so all the time as that expends precious mental energy. Its important to speak to people you trust and tell them how you feel. Indulge in that activity that always makes you feel better – for me thats listening to music. If you imagine your mental energy supplies like a tank these can all help replenish you in some small way. Anything that reminds you that this experience won’t last forever, will be incredibly helpful in getting you through!

Reason to be worried?

So far, this blog has focussed mainly on myself and how I’m feeling though as I’ve said time and again, I consider myself to be in a relatively priveleged position. I’m in stable employment. While it may not be that good for me to work from home I am able to do so. Being young without any physical health issues, I’m also at low risk of dying from Covid-19.

Spare a thought then for those who are dealing with this transition in thier lives worse than me. A few blog posts ago I detailed my struggles in uni and finding work, as an autistic person. I am very grateful that I don’t have to deal with the struggle of looking for work now, or being in higher education and experiencing even less of the camaraderie and friendship which rightly defines that era of life. Not to mention, that 10% percent of autistic people with physical disabilities or underlying health conditions, those who suffer from atypical immune responses like autoimmune disorder.

I have explained how how I personally suffer on the mental health front, however this is a vast and wide ranging problem. The Autism in Adulthood journal takes care to point out that with social distancing a key factor in reducing the spread of the virus, many of the services available to autisitc people have disappeared. I can only imagine what the people who I used to support on a voluntary basis are going through. We know that ongoing isolation and loneliness can be as detrimental to a persons health as smoking or fast food can be. Also, research done on the Ebola epidemic suggests that living through one may be associated with symptoms of depression, anxiety and post-traumatic stress disorder. As the journal just cited states: ‘Given that autistic people are already overwhelmingly likely to experience mental illness, and nine times more likely than the general population to die by suicide, the mental health consequences of COVID-19 may be devastating’ .

I bring this up as as far as I can tell very little has been considered about disability, either in Covid19 recovery planning or policymaking. Its not been entirely absent. Some support services as well as university courses have been put online, shops have introduced priority opening times for disabled customers, and mutual aid groups are helping to deliver essential supplies to the disabled, as well as hosting online meets etc. A lot of the community responses we’ve seen have been inspiring but in terms of national action plans for looking after disabled people during covid, and helping them deal with the effects of returning to a post covid world, I’m seeing very little.

In the UK, the response to the virus is looking less and less like a national effort that we all need to unite for and more like a curtian-twitiching dystopia. Last week the UK parliaments joint committee on human rights published a report which stated that “It is unacceptable that many thousands of people are being fined in circumstances where the lockdown regulations contain unclear and ambiguous language”. Government ministers have made admittedly non official statements encouraging people to snitch on people breaking the ‘rule of six’. This is in spite of constantly guidance over what you should or should not do, and an absence of financial support to employees or people self isolating.

The underlying moral here is: Give people who are anxious and worried the help that they need, while combining that with clear and practical instructions, and people will do what’s required. Create a climate of fear with an air of uncertainty as to what the rules are and whether they should obey them, and people kick back .

An Atypical Perspective…

Its normal to find transitions scary: If you view your experiences as a train journey and every sudden change as a diversion to some uncertain place, thats rightly going to make you feel anxious. In those situations we want to know where we’re going and what we’ll encounter when we get there. Not having that makes us uneasy. To overcome that worry, cling to the elements in your life which are more certain. Phone a loved one, listen to your favourite song. These help us to maintain that sense of order and certainty which are necessary for everyone’s wellbeing, especially autisitc people!

The Coronavirus is making disabled people ill (in more ways than one): Talking about peoples health and wellbeing with regard to the coronavirus is not an act of defiance against the restrictions. By contrast, its a plea to help the most vulnerable at this time. To have support services still in place to help autisitc and disabled people through the coronavirus period, so that we can be a more supportive society post-covid. Efforts to promote this have focussed on encouraging individual acts of charity, which while welcome, fail to confront the international crisis in physical and mental health, worsened by the pandemic. Rather, these problems require our leaders to pay attention and put forward a coordinated response that strengthens the ability of communities to support each other.

Creating a climate of suspicion is counterproductive: From an autistic perspective this uncertainty creates a sensation of information overload, where our base emotional instincts overtake our ability to effectively process all the information being chucked our way. This ultimately means that going about my routine for the sake of my own wellbeing, or seeing a family member that I live with half the time, becomes treated with a sort of suspicion. By mutual effect, this makes people especially likely to distrust authority and disobey regulations, especially when they believe they have a need which prevents them from complying. Considering that I have a fear of confrontation, especially from people in authority, the uncertainty fueled by our leaders furthers my sense of panic. Put simply, don’t confuse people, and support them where possible. With that mantra, we will hopefully still have a society once this crisis is over.

A Remedy for Loneliness: Mutual Aid and Autism

I enjoy being around people,

That might sound strange, considering stereotypes around autism. I don’t always like being around people. Its not unusual to find me secluding myself for a few hours everyday, recuperating from the sensory overload which comes from feeling crowded. That said, I do enjoy the sensory stimulation that camaraderie brings.

Socializing and being around others be that in a workplace, at a concert, or in the comfort of our own home is very much a part of our society…most of the time. When talking about autism the issue of loneliness gets swept under the rug as ‘they’re used to being alone’.

When I did voluntary support work for autistic adults some would find comfort in a level of seclusion, but most would like some form of interaction. So while some enjoyed the humm of city life more than the walls of thier living setting, some actually felt incredibly cut off in busy environments. There is after all, more than one way to feel lonely.

That last point is what I want to focus on. The different types of loneliness, and how mutual aid provides a blueprint for helping autistic people to be part of thier community. Behind any serious effort to combat loneliness though, has to be a willingness for communities to come together as a movement to form ‘spontaneous, long-lasting, and beneficial associations’

Loneliness

A complicated issue which effects many groups, according to the National Autistic Society, 79% of autistic adults feel socially isolated.

I can personally relate. I’ve described before how sensory stimulation can be overwhelming. However, its friendly environments where I feel happiest. I mainly become overwhelmed when I’m in a sensory environment that I’m not a part of. Picture this: you’re in a crowded festival, the streets teem with revelers. The sounds and sensations of liveliness are all around you but you’re not part of any of that. You can’t find your friends, though you certainly don’t want to leave. Confusion sets in. Confusion turns to panic, anger and frustration. You’re in a busy environment, yet you’re isolated.

A significant amount of research into autism has focussed on children. This often leads them to becoming more isolated as they grow older and try to adapt to the world around them. Its important to realise the effects that a sense of isolation can reap.

Autistic adults are at a higher risk of physical and mental health conditions including depression, diabetes and heart disease. They are also more likely to die early. Indeed, the impact of loneliness has been scientifically estimated to be as damaging as smoking 15 cigarettes a day.

Without the support network they need – and sometimes without even having been diagnosed – adults with autism struggle to to access housing and medical services. When I was an outreach worker I encountered individuals whose lack of support had forced them into group homes where they were not physically alone – if anything some of the homes I went to were overcrowded – but experienced a sensation of loneliness, whereby they felt thier sense of routine and emotional support broken. I felt a huge degree of responsibility knowing that I was sometimes the only person providing that familiarity.

Houting argues with reference to covid-19 that many autistic people were already experiencing that sort of isolation brought on by lockdowns:

“There is a vast difference between choosing self-isolation out of preference, and choosing—or being forced into—self-isolation out of necessity. Many autistic and otherwise disabled people live lives of isolation not motivated by preference, but motivated by self-preservation. Exclusion, bullying, harassment, and abuse; inaccessible physical and social environments; and a lack of appropriate services and supports can mean that for many, self-isolation is the only option. Now, the broader community is being faced with the circumstances in which too many autistic and otherwise disabled people find ourselves every day. I can only hope that this might engender empathy for our experiences, and prompt more allies to work together with us to build inclusive, accessible communities when this crisis eventually ends”

Jac den Houting, Stepping Out of Isolation: Autistic People and COVID-19

This is part of the reason why autistic people as well as support groups emphasise the value of social connection. Its vitally important for autistic people to have support networks and ‘buddies’, in a way which transcends the traditional ‘helper-helped’ relationship….

Mutual Aid

“The mutual aid tendency in man has so remote an origin, and is so deeply interwoven with all the past evolution of the human race, that is has been maintained by mankind up to the present time, notwithstanding all vicissitudes of history”

Peter Kropotkin. Mutual Aid: A Factor In Evolution

Traditionally, help available to autistic people has reflected a ‘helper-helped’ relationship – whereby an autistic individual is allocated a support worker who assumes the responsibility of helping that individual. While there’s nothing wrong with that, within restrictions of resourcing and having to have activities ‘signed off’, any approach which focuses purely on formal methods of extending help will likely be inadequate.

With Covid, Mutual aid activities began small scale; delivering essential medicines and food, though many have gone further through activities like cooking healthy food for those who are shielding, setting up helplines, holding virtual meet-ups, and raising money for households who are suffering the financial effects of the crisis.

While it is true that many autistic people are eager to return to the outside world, the extra sensory stimulation of the new environments fostered by social distancing might be difficult for autistic people to comprehend at first; This is where the traditional activities associated with mutual aid are really useful. For many autistic individuals having people from thier communities deliver supplires, or form a ‘bubble’with them, might be incredibly affirming for thier health.

Covid has exposed how sensory the outside world can be. Social distancing guidelines are encouraging roads to be closed, for people to walk on one side of the street or for music to be turned down in shops so that people don’t have to speak loudly. I don’t think people truly recognized how ‘noisy’ the world was. Which elements of the new world we want to keep is a subject for another blog post, but the long term effects of widespread mutual aid programs may bring people metaphorically closer together, creating communities of positive reinforcement so that all people – not least those who are autistic, do feel safer going to the shops, going for an appointment or seeing live entertainment.

“The real, pivotal impact that Mutual Aid groups have had during this crisis demonstrates the potential of community power. More specifically, it demonstrates the potential of a less formal, community-led, and more human way of thinking about responding to people’s needs, outside of the traditional public service framework that is the established and dominant model of deploying support. With extraordinary speed, the most successful of these groups identified the most critical needs in their communities and met them with a holistic approach that has strengthened the local social fabric and improved all participants’ wellbeing in a time of crisis”

Communities vs. Coronavirus, the rise of mutual aid

Part of the strength of mutual aid groups is thier spontaneous and horizontal nature. The point is not putting people in charge. Rather, people are coming together as equals to solve a problem, whilst evading traditional routines of management and administration. For that reason they rely largely on people trusting each other; In the case of the coronavirus this has allowed groups of volunteers to reach people quickly.

Challenges come through attempts to control aid groups by authorities. A quote by a volunteer, cited in the rise of mutual aid report states that: “The council wants to professionalize everything. They want groups to fit into their corporate plans. It’s really unhelpful.” For that reason it is important that councils take a facilitation approach in helping to connect different groups, budgeting and working with local businesses and charities to be part of mutual aid programs. This approach helps to retain the horizontal, community minded approach to working, without centralizing decision making or slowing process’ down.

One sticking question that I will conclude on, is the extent to which the concept of mutual aid is political. Those struggles over top down vs bottom up organising prove to me that the idea is at least in part political. That said, one of my traits is a tendency to see everything through a societal, wide angle lens. The easy answer to this would be that the activity itself may be political, but proving a point shouldn’t be the priority. Still, theres something inherently political about communities coming together in a non-hierarchical way to help remedy pressing social issues like loneliness. Either way, the concept certainly beats division and selfishness.

An Atypical Perspective…

There’s more than one kind of loneliness: While the standard perception of loneliness is being on your own, there are a number of elements which can make people feel lonely. In the case of autism, over stimulation and feeling cut off from the world by struggling to comprehend everything going on around you can cause loneliness. Lack of support means that some autistic individuals especially, suffer chronic loneliness later in life, making them choose isolation out of necessity, or else places them in environments where thier needs are not best met. The detriment to mental and physical health caused by this illustrates the need for support networks…

Mutual aid presents a template for offering support: Insofar as existing methods of authority-mandated support has gaps, mutual aid i.e communities coming together to support each other, presents an alternative model. This is not to say that future efforts to support the vulnerable, should be entirely charity focussed but that the model itself is promising. Through actions such as delivering essential resources to the vulnerable, organizing community get togethers and creating dedicated support networks for those who are suffering, the approach creates a form of psychological safety. This transcends the necessary but often limited help provided by short time support work.

Community organising is personal and political: From a personal perspective, mutual aid schemes help foster positive communities through supporting some of the most vulnerable people within them. This should be the primary motivator behind them. However, through mutual aid, you are intervening in a scenario where people have been ‘left behind’ and presenting an alternative method of help, which runs contrary to the individualistic mindsets of ‘deal with your own problems’ and ‘one size fits all’ methods of combating isolation. Mutual aid activities present a different way of thinking about our relationships, which in turn imparts questions about how we run our societies, especially during times of crisis.

We’re Not A Virus: on the value of human life

Since starting this blog I’ve made a conscious effort to avoid talking about the coronavirus too much. It is not good for me to immerse myself in the subject, and I want to use this blog to explore a range of pathways.

There’s one phrase which I’ve heard multiple variations on which I felt needed addressing from an autistic perspective: ‘humans are the real virus’

Despite being well intentioned – usually with an environmental message – the phrase to me, brings back thoughts of some of the most crass and harmful misunderstandings of how our planet is being damaged and who’s responsible. These tie into overpopulation myth and nastier ideas about who is deserving of the right to life.

This one was difficult to write in that the emotional way I experience the world around me meant that researching some of these subjects inspired a gambit of emotions including anger, sadness and worry. However, this is a subject I feel passionate about. I hope that the blog throws up some interesting concepts about how to approach the way we talk about pandemics and the environment, taking care to bear in mind who we’re talking about when we place blame.

We are not the Problem

“Corona is the Cure! Humans are the disease!”

Hundred Hands, while impersonating extinction rebellion.

That’s what tweets from a group proposing to be affiliated with Extinction Rebellion read a few months ago. It later came out that behind the tweets were actually from an eco-fascist group called ‘Hundered hands’. One claim they made in XR’s name was that ‘Only white people care about the environment’.

They’re not the only ones spreading falsehood. The fake stories about Venetian dolphins returning to the canals with the caption We.Are.The.Virus have rightly been mocked and exposed as false…

Confession: early on in the coronavirus I shared an ‘infographic’ which cherry-picked stats to argue that the virus only kills very senior people with underlying health conditions. Although not strictly population related, in my ignorance I shared something that partaked in a subtly perverse bigotry in favour of young, healthy people.

This is the issue I have with the ‘We are the problem’ memes. They devalue the struggle lots of people are going through, sometimes just to stay alive. BAME communities are at higher risk. Some disabled people say lockdown has made them prisoners inside thier own homes. Older people and people with underlying health conditions are obviously very high risk.

With regard to autistic people, I’m lucky in a sense – I have quite a large degree of independence and mobility. As someone who used to be an outreach worker you get a sense of the claustrophobic atmosphere of group homes. Autistic people living in those environments are rarely seeing family or therapists at the moment, as those spaces too are vulnerable to Covid outbreaks. This is a particular issue in the US where just that problem has killed thousands.

Dealing with lockdown I have occasionally felt cut off and uncomfortable with adjusting to the changes in routine. This is an issue autistic people are suffering with to different extents – having little access to loved ones or services, support workers have attested to an epidemic of anxiety and depression suffered by individuals in community living settings.

Constantly repeating ‘We are the problem’ not only devalues the experiences of those who are genuinely suffering, but couches its messages in a nihilistic, cynical view of the world that has real life implications related to the value and worth we see human life…

Devaluing life

In 2019 amid Greta Thunburgs speech to the UN, actor John Rees Davies appeared on Question Time, and blamed our climate problem on population. Years earlier he’d stated about the Muslim population: “There’s a demographic catastrophe happening that nobody wants to talk about”.

fake posters reading: corona is the cure! humans are the disease!

Remember when I described ‘Hundred hands’ as eco-fascist? Well, those ideas stem from Finnish thinker Pentti Linkola who once wrote, with comparison to refugees: “When the lifeboat is full, those who hate life will try to load it with more people and sink the lot. Those who love and respect life will take the ship’s axe and sever the extra hands that cling to the sides”

In March, a Telegraph journalist provoked controversy for writing “COVID-19 might prove mildly beneficial in the long run by disproportionately culling elderly dependents” – This applies the same logic, except rather than painting the virus as a saviour of the environment, he’s using his economic beliefs to argue that the virus will be beneficial in allowing us to save money on social security.

Most people sharing the ‘we are the virus’ meme would deny that they are advocating any of that. The point here isn’t what individuals believe but how statements about needing less people prove counterproductive and harmful in the face of actual threats to human life.

“Broad calls for limiting population, or rejoicing in the pollution-stunting effects of the world’s economy grinding to a halt, are indirect endorsements of mass suffering for people who are already most vulnerable. Blind applause for environmental progress without acknowledging who’s bearing the cost is simply a rebranding of white supremacist ideals. And as with most disasters, the effects of the novel coronavirus won’t be distributed equally. Experts say that older, sicker, and poorer people will disproportionately suffer and die from COVID-19 and its economic impacts”

Garcia, The pandemic is bringing out environmentalism’s dark side

This is what the ‘We are the problem’ narrative does. Perpetuates an image of the human life as worthless. Who cares if they die? ‘we are the problem’ after all. Surely, anything done to help will cause the population to burst at the rafters and prolong human suffering in the long run

I was thankfully not able to find any examples of the ‘we are the virus’ logic being used against autistics. However, it would be revealing to know what the Telegraph Journalist thinks about those ‘unproductive’ members of the neurodiverse population, or what Linkola thinks our reproductive rights should be. With any statement about humans being a disease, come questions about which humans are or are not deserving of life.

Population Control and Eugenics

Thomas Malthus was a demographer, known for his 1789 essay On The Principal of Population in which he argued that the population would grow every twenty-five years, outstripping resources and leaving future generations in turmoil. He was writing against a background of colonialism. As professor of history and political economy at the East India Company’s college, he justified the starvation of Indians in famine on the basis that it was caused by thier ‘compulsion to breed’.

Through a Malthusian lens, diseases such as Covid-19 are ‘positive checks’ – useful in regulating the swelling ranks of population. Ideas such as lockdown and social security would have been seen as ridiculous. Looking back the examples I gave earlier we see this logic being applied – the idea that refugees will place a greater burden on resources, that we should sacrifice older sections of the population for the sake of the economy. At the heart of the Malthusian obsession with resources is the idea that some lives are disposable, while others are not.

This ignores the fact that despite everyone being responsible for climate change in some small degree, human beings are far from being equally responsible. A study in 2017 showed that just 100 companies are responsible for 71% of global emissions. While birth rates in poverty stricken areas of the world tend to be higher, environmental death does not correspond to people in the third world having more children – rather, western consumers are contributing to tens of thousands of pollution-related deaths in the countries where the goods are produced. While coronavirus has resulted in environmental ‘benefits’ this has been down to a slowing down in the global economy brought on my lower productivity, not the millions of deaths.

I’ve talked before about how Hans Asperger played a role in selecting so called ‘high functioning’ autistics who could contribute to Nazi society, and sending others to thier deaths. That’s an extreme example of what I’m talking about. Before the categorization of autism they were labelled schizophrenic and would probably be institutionalized. Throughout the 60s’ and 70s’ methods such as Applied Behavioral Analysis (ABA) utilised electric shocks, starvation and corporal punishment with a look towards curing autism.

This is the principle behind Malthusian idea. They point to disadvantaged subsets of society and argue that we just do not have the resources to support them. Individuals within that subset then face a choice – either change your lot in life, which is for many impossible, or die.

“scant aid is being sent to formerly colonised countries to help the economies we asset-stripped combat the spread of the virus. Borders are closing. Millions are being suddenly turfed onto the scrapheap of unemployment and homelessness, exposing them to greater risks of COVID-19.The sham nihilist universality of claiming ‘We are the virus’ means in practice that the usual suspects are skewered on the sharp end of ruthless cronyist politics keen to shore up resources among the already powerful”

Elanor Penny, We are not the virus

You are unlikely to see Malthusian ideas overtly referenced today, in the same way as the British government employed them in defending its lack of intervention during the Irish Potato Famine (yes, really). However, they are still influential. They manifest when a newspaper column argues for the ‘culling’ of elderly residents. When its argued that disabled people should lock themselves up indefinitely so abled people can “get back to normal”. When people in community living settings and claustrophobic communities are placed at increased risk. And yes, when people say ‘we are the virus’

An Atypical Perspective…

‘We are the virus’ devalues life: By categorizing humans and nature as somehow separate, statements like ‘We are the virus’ and the sinister ‘coronavirus is the cure’ assign less importance to the increased risk certain groups are at. I argue that preserving any environmental benefits we witness as a positive side effect to the world being on lockdown, must be considered in tandem with how we save as many lives as possible. Humans are part of the natural world. So, rather than devaluing one or the other, the question should be how we operate in harmony with the rest of the environment, post lockdown.

The logic behind the idea is dangerous: With the statement ‘we’re a virus’ and the devaluing of life that comes from that, the inevitable assumption is that we should be doing less to help those in higher risk categories such as the disabled and elderly, to stay alive. By this logic, we’re marking able bodied and healthy people out as significantly more deserving of life than those who are perhaps more ‘capable’ or ‘useful’. I hardly need to explain further why this idea is dangerous, but needless to say that any movement which claims to respect life should respect and value the lives of everybody.

The idea achieves nothing in the face of actual threats to the environment: While the people sharing ‘we are the virus’ might genuinely believe that they have noble aims, what does the statement actually do in the face of ecological and natural-born catastrophe other than devalue the importance of the humans who suffer the effects of environmental catastrophe? If anything, the mantra promotes inaction in the face of pandemics and natural disasters, and defends those who have the most to lose from shutting down the economy – coincidentally the same ones who are doing most of the polluting. Whichever way you consider the issue, the concern should not be about the amount people on the planet but how we choose to interact with the world around us.

I’m Autistic…here’s how I’m dealing with Lockdown

‘I bet self isolation comes naturally to you doesn’t it?’

‘No one needs to tell you to socially distance, am I right?’

‘The benefit people like you have during this time is you’re always very happy with your own company’

These are three of the statements I’ve heard from various people during lockdown. They’re (usually) intended in good faith, yet come across patronizing

The truth is that a lot of autistic people are struggling just as much with everyone else. While I do enjoy my own company and often become overwhelmed, that does not mean I don’t look forward to regaining the freedom I had in the pre-coronavirus world.

While in pre-lockdown life there were lots of sensory simulators -the train journey, the buzz of city life, live music – my heightened perception means they can motivate or enthuse, just as they can scare or overwhelm.

And all that is going to come back. I’ve said before that I’ve learned not to take anything for granted, and those emotional or sensory stimulants, and the routine that comes with them, may present themselves as yet more stimulating.

In the meantime, here are some of the ways I am learning to deal with lockdown, day by day.

Routine

Understandably routine often gets confused with repetition -and that’s certainly part of the idea, though it need not be a laborious process.

In lockdown, days have tendency to blur into one – the stagnant feeling that life is not going forward or backward can lead to a lack of motivation. Indeed, the idea of routine grants me and some autistic individuals a great amount of comfort – it helps to create a sense of sureness in our actions, and our thoughts (The amount of times I’ve been doing research and my minds decided to focus on a complete unrelated matter!) – Its easier to feel productive if you have set aims and goals to work towards vs. being in the weird in between space, when you are unsure as to how to fill your time.

Lockdown has taken away that environment, very much by making my home and work life inseparable. I do not live on my own, and more than once I’ve found myself awkwardly having to tie the loose ends of my day together, reconciling a particularly noisy day at home with an important meeting. Having a routine allows me to mentally separate the two mindsets.

‘Stimming’ and stimulation

Shorthand for self stimulatory behaviour, you may have witnessed stimming through autistic people rocking back and forth, flapping their hands, repeating words or phrases. It appears odd, but like routine it is an important form of self regulation – as the AsIAm blog explains

An autistic person is able to self-regulate through stimming and navigate their sensory environment. This helps them cope with challenges in their sensory processing in their day-to-day lives. It is a means of easing physical pain and internal anxiety as well as expressing one’s emotions, from frustration to joy.

AsIAm blog (2018)

Often not allowing an autistic person to express this is harmful as it can generally trigger information overload or ‘meltdown’. With respect to lockdown, we have less of a sensory environment surrounding us, yet its one of the most emotional times many of us have ever experienced. If I read a news article that triggers an emotional response, I’ll often pace around my room to keep my feelings in check.

That’s not to say that ‘stimming’ is bad – Indeed, as mentioned at the beginning of the article, I miss the rush of sensations that greet me on a day to day basis, which allow me to make sense of the world.

I’m still going for walks, making sure to cook myself a variety of foods, listening to a range of different music, I could go on. These elements alter my mood massively – a nice walk through the local wood, one of my favourite foods or an album I get an emotional response to can cheer me up, just as a mean word from someone can mess me up massively – its always been that way.

Music and Writing

“Some mornings I pray for evening, for the day to be done and some summer days I hide away and wait for rain to come ’cause it turns out hell will not be found within the fires below, yet in making do and muddling through when you’ve nowhere else to go.

So then I remember you, and the way you shine like truth in all you do and if you remembered me you could save me from the way I tend to be, the way I tend to be”

Frank Turner

Another element of autism is obsession. Actually, scratch that – obsession is a nasty word. One element of autism is having a passion for a range of particular subjects. I have a few of these; I have touched on my love of journalism and getting to the depths of a mystery or investigation (an interest which leads me down some very weird research rabbit holes). I’ve chosen to focus on music here, cause this is a blog post about coping and occasionally feels like the one element keeping me sane.

Music is not so much a means of escape. Rather, listening and putting my thoughts on music to paper provides the means to articulate my emotional up’s and downs in a way that I may not be able to express otherwise. If I’m feeling depressed I’ll quite often listen to a song that expresses those feelings. Simultaneously, if I’m having an up day, I will listen to positive music. Through that I’m able to experience a form of emotional management which allows for a form of catharsis while simultaneously calming me down.

So you see through this ‘obsession’ I can exercise a form of emotional and self regulation that allows me to cope during lockdown.

An Atypical Perspective…

Routines are valuable: planning weeks into advance reminds me that this is temporary. Very much like ticking off tasks each week, across a long plan, while working towards the eventual lifting of restrictions. Its like having a sense of power, almost, to say ‘right’ I’ve got through everything I needed to do in that month, and I’ve got a plan for the next.

Having sensory input is important: And indeed, dealing with that can be an essential learning process. Surviving this in a healthy way will require regulating my emotions in a way which provides seeing sensory input as positive, and reacting to that in a way which helps me make sense of those emotions.

Having a passion is vital: Using music as a form of self-regulation and putting those emotions to paper has been very useful – as someone who runs a separate blog on the subject, and writes for various publications, the activity not only allows me to set targets for myself in a time when it can be easy to question the meaning in our lives, but preoccupies my admittedly busy mind on an analytical and skillful task.

I hope these tips can help whether you are autistic or neurotypical…

Information Overload! ‘Misinfodemics’ and the role of media

Are you ever confronted with so much information, or so many options that your ability to process stops working and you become anxious?

Yeah me to. Living inside my head can be quite difficult at times. This shows in numerous ways, yet there are 3 illustrative examples.

I can’t deal with multiple commands at the same time.

If I’m in a noisy room for too long I tend to retreat to seclusion.

I get nervous about Cash Machine withdraws, so I (often) stick to a routine amount, which lends a comforting sense of structure.

Everybody suffers with information overload. Some autistic people suffer with overload more, yet all our brains are receptive to simple, easy to comprehend info, that establishes a brand and sets a great story.

Stories

There’s a link to be drawn between the way people like me awkwardly digest information, and campaigns. Politicians and brands use catchy three word slogans ’cause they know you will remember and understand them.

It’s the same with ‘fake news’. They serve the function of boiling down complex subjects like coronavirus, to fictional or at least incomplete titbits of information.

‘Speed and information overload – the internet allows what is posted to spread at the speed of light, before anyone can check it. By the time one scam or lie has been investigated many others have taken its place’

ELA area, public library

We are seeing a process where more information is available, yet is increasingly condensed. Rather than two people giving us separate commands, hundreds are. This in itself creates an ‘overload’ where it can become anxiety inducing to find a complete picture of the full truth.

‘Misinfodemics’

Misinfodemic’ (Noun): The spread of a health outcome facilitated by viral misinformation

Posters as part of an Ebola Health Campaign in the Congo

Having an overload of information understandably leads to people seeking simple answers which often provide an oversimplification, peddle an agenda, or are just false.

According to WHO Director Ghebreyesus, with Covid-19 ‘we are not just fighting an epidemic; we are fighting an infodemic’

This is not a new idea. Eerily basic answers to complex problems have shown throughout history.

Anti-Vaccine: In 2019 England’s NHS chief executive blamed anti-vaxx content for their falling uptake. This points to how complicated concerns around child safety can be exploited to promote dangerous theories like ‘vaccines cause autism’ (An idea my existence finds particularly absurd).

Ebola ‘fake news‘: Violence associated with politics, in democratic republic of Congo, aided narratives about the US creating Ebola, leading to armed attacks against treatment centers. This provides a dangerously inane answer to the problem of disease, linking politics with confusion about the disease.

A Soviet Propaganda poster about HIV/Aids

‘Misinfodemics’ in the Soviet Union: Soviet propaganda in the 1980s claimed that the US was responsible for the spread of HIV in Africa. This is another example of public information being weaponized to play into pre-established ideologies, while producing an emotional response to the threat.

We are not immune to this effect. When someone claims that ‘5G frequencies carry the coronavirus’ that’s being based off confusion about the causes of coronavirus, distrust of authority, and linking two consecutive stories together.

“disease also spreads when people cluster in digital spaces. We know that memes…spread like viruses: mutating rapidly until one idea finds an optimal form and spreads quickly. What we have yet to develop are effective ways to identify, test, and vaccinate against these misinfo-memes”

Gynes and Mina, The Atlantic (2018)

Much of the efforts to combat these types of stories have focussed on ‘debunking’ . While this has its place, its not particularly helpful. Online experiments in Brazil found that providing corrective did not lessen common misconceptions about Zika, and reduced levels of confidence in all information about the virus.

Without a rethink of how media platforms present information, our crowded media environment will always result in an ‘overload’ effect where the lack of ability to comprehend numerous ‘goings on’ in our busy room, will lead us to the seclusion of stories that provide dangerously easy-to-understand answers.

An Atypical Perspective…

Being shouted multiple commands at once is unhelpful: consuming the news is stressful. The dramatic reporting is overwhelming – heightening worry which is easy to exploit by those shouting ‘foreign virus’ or ‘conspiracy’. Different outlets all having perspectives, also creates an air of mistrust. While dramatics have their place, the task of news media could be reassuring and explaining.

Our media spaces could be less busy and noisy: We have a duty to seek out reliable info. Yet, the difficulty in seeking it is absurd. Making media spaces seem less noisy could be a matter of digital and traditional outlets prioritizing expert analysis and ‘explainer’ material, where people can seclude themselves to get a full picture. This must rely on authorities like government providing trustworthy, simple info.

Routine as a manner of coping: Much like me with cash machines I often stick to a set amount as it allows me to retain a sense of certainty and structure. How much news do you need to consume to find out all that you need to know? set an hour aside every day to find out the facts, then turn your computer off. Outlets obviously have a role by making understandable info accessible.

By implementing some of these methods we would also be doing a favour to some autistic people as well who suffer with uncertainty and ‘overload’.

What are you Passionate About? Making Comparisons in a Complex World

“Name something that you’re passionate about”

I froze. I was sat opposite an interviewer at an assessment centre for Change 100 – a charity scheme that helps disabled graduates into work. “there’s lots I’m passionate about” I jokingly remarked, taking a few seconds to calm the whirlwind that had just ensued in my mind.

“I’m passionate about honesty in journalism. I did my dissertation on ‘fake news’…and I became interested in trying to discover the truth. That’s what I’d like anything I do to be focused on, whether media or research. I think that relates to my strengths…I try and be honest with people, about my abilities. What I can do and can’t do. I’m always trying to learn”

*Internal screaming* what on earth was that? I’d just given them a long answer on honesty in journalism, that tried to connect ‘fake news’ with being honest about your abilities! That couldn’t be called straightforward.

Skip ahead. It was the Thursday before Easter 2019, I was stood on a train platform in Oxenholme for a camping trip when I received a phone call: I’d been successful and secured a placement in communications!

Like a spider slinging a web, I began to make connections. Honesty led into seeking truth, leading into Communications: Gotcha! Later I was invited to be an assessor at a Change 100 assessment centre. I heard answers on everything from animal habitats, to the similarities between washing machine and career cycles.

Hearing different explanations of subjects which are seemingly related is fascinating. I’m not patting myself on the back here. Sometimes not being able to think simply is a pain. That’s why people use mental shortcuts.

Mood’s are one example. If we’re ‘happy’ that’s probably due to a range of factors causing chemicals to be released in our brain, and calculating a series of memories to find the right emotion. One description doesn’t cut the mustard. (This is why I don’t get invited to family barbecues)

However, little did I realise, that skill would come in handy.

Connections and Coronavirus…..

Coronavirus is incredibly significant and complicated, so we find ways of simplifying the problem.

Example: Flatten the Curve – Basic idea: there is a line which represents NHS capacity, we need to keep the curve i.e number of infections below that line, to stop our hospitals becoming overwhelmed. Simple enough.

Clearly, hospital capacity is a complex problem. However, here’s a simple way of distilling the issue, and getting everyone to stay at home, practice social distancing, and wash their hands to the opening bars of ‘Welcome to the Black Parade’ by My Chemical Romance (That was the song right?)

However that doesn’t mean we should always opt for simple explanations. Here are some case ready examples of where drawing comparisons proves useful.

  • Historical parallels: During the Ebola epidemic, misinformation became a problem in the DRC. Media platforms, such as Facebook and WhatsApp, have been used to promote conspiracies since they entered popular culture. Perhaps that raises questions about being wary of misinformation now?

  • Personal Parallels: Different people deal with lockdown in different ways: some by emphasising healthy routines such as excersise and hobbies, others by making lists of everything they are going to do post lockdown. I’ve learned not to take anything for granted. What tactics can apply to yourself and what can you learn from them?

  • Organisational Parallels: There are widespread changes to society happening from regional governments opening up their archives, to police using new technology to communicate with the public, to the entertainment industry looking for new ways to raise funds. What can organisations responding to the Coronavirus learn from each other?

As shown, we’re constantly making links between different events or elements often without realising that’s what we’re doing – some doing this more than others. Drawing those similarities can pose some important lessons about how we organise our societies, our personal lives, and our institutions. Elements like watercolours: working in tandem with one another to create an expansive if perplexing picture.

I argue, we should not be dismissing these connections as insignificant, yet instead taking more time to analyse them and see what we can learn.

An Atypical Perspective…

  • What are you passionate about?: This is a great place to start making sense of the world. If you’re interested in ancient history, there might be societal lessons you can apply from the past. If you’re into music, that might be a cornerstone in your emotional development, as you sympathise and relate to the feelings on display.

  • Look further than shortcuts: Mental shortcuts like ‘this worked last time’, can be incredibly useful for finding ways of thinking about a problem. However, they can also provide oversimplified answers. If there’s a complex or difficult problem like poverty, or mental health, its always worth taking a detailed look at the causes, if only to give yourself a well rounded view.

  • The most insignificant of links can be valuable: Don’t dismiss connections because they seem flimsy. There’s no absolute connection between journalism and self-assessment. However, that view gives me a way of looking at things that allows me to hold myself and my work to a standard, and apply analysis, investigation and precision to different elements in life.

On that note, I will leave you with a reminder to stay inside, wash your hands…and thanks to the song lyric initiative, I’ve got just the tune!