Social Grief: coping with ‘the end of the world’

Embers fly above a firefighter as he works to control a backfire as the Delta Fire burns in the Shasta-Trinity National Forest, Calif., on Thursday, Sept. 6, 2018. The blaze had tripled in size overnight. (AP Photo/Noah Berger)

“How are you coping with everything”. The question came as a shock to me. Up until March 2020 the new decade felt just like any other, from a selfish, personal perspective at least. And when the news of the pandemic first broke, I was in a state of blissfully optimistic denial. Its not until the first deaths happened and the seriousness of the situation transpired to us all that I felt a sense of very real grief. Specifically, that out of place feeling which lies at the intersection of not knowing how to feel against a background of actual stories of grief that were flooding from the news, and the anticipated grief of everything that would come next. How was I coping with everything? ‘with the end of the world?’ came the darkly humorous response. It wasn’t of course, but entertaining the idea felt like a great coping mechanism. Then another thought occurred to me. What keeps humans from curling up in the face of seemingly insurmountable threats to human life and the world around us?

Despair…

In my last blog post I talked about Greta Thunberg, and how her autism is integral to her activism. In doing my research I was particularly struck by her assertion that “I thought it was very strange that humans who are part of the animal species, could be capable of changing earth’s climate, because if we were and if it were really happening than surely we wouldn’t be talking about anything else”. Indeed, she was one of the people most affected by what can be called climate despair, until she found a voice through her decision to strike. Perhaps that’s one way we deal with seemingly apocalyptic scenarios – the idea or hope that we have control or can do something. I won’t deny the importance of that motivation.

Another explanation is that like grief, the climate or even the pandemic doesn’t appear to have a tangible form. Its influence can be felt in different ways across the course of our lives, but the lack of visual presence makes it easy to ignore, even if we can see effects such as burning forests and crowded hospitals as tangible evidence that these are issues which we ought to be worried about. One classic, if oversimplified, characterisation of autism is that we struggle to see the forests for the trees. We see details before we see categories. This might be why, when thinking about climate change, Greta Thunberg thinks of the ecosystem as a large system of which we are a part, and not something separate from ourselves.

This relates to an issue called the non-identity problem – a classic example comes from the philosopher Gilbert Ryle who tells the story of a man who goes to Oxford and asks to see the University. So, they show him the lecture rooms, the debate hall and even the students walking between classes. At the end of the tour he says, ‘thanks, but where’s the university?’. This is a brilliant example of mistaking a concept for a separate object. Rather than seeing the university as an interaction between objects, people and what they do, the man in the analogy thought of the university as a separate ‘object’. This is why talking about ‘the environment’ or ‘the pandemic’ as things separate from ourselves, is a mistake. Autistic people aren’t the only ones to apply a more integrated look at issues like the environment. Indigenous communities may have grief over loss of the natural world, which is so closely connected to their identity that they rightly see themselves as part of nature. An Innuit elder is famously credited as saying “We are people of the sea ice. And if there’s no more sea ice, how do we be people of the sea ice?”

Denial…

I’m oddly reminded of the music video for the song ‘Just’ by Radiohead, where a man going about his daily routine stops in the middle of the street and lies down. When he’s asked why, he simply replies ‘you don’t want to know’. This process repeats until the man has amassed a pretty decent crowd around him. Eventually they convince him to describe why he is lying there. His lips move without subtitles before eventually cutting to a wide shot of everyone in the street led down, as if stuck by some unbearable truth. Many have debated what the man says at the end of that video but I like to believe that he’s found a way to distil the enormity of the problems we face to a few sentences, in a way which forces everyone into despair…

The type of despair we see represented there could come as a consequence of climate change, or the pandemic. Its part of the reason campaigns like ‘look into his eyes…’ are considered effective: they turn invisible danger into something tangible and real. According to psychology scholar Renee Lertzman, we can see this process happening with the environment.

“It’s a surreal experience because we’re still in the same system, so walking around, people are driving, and everyone’s eating a lot of meat and everyone’s acting like that’s normal. For some people, that feeling is incompatible with carrying on with the business of everyday life”

Renee Lertzman, Environmental Melancholia

However, simply inspiring an emotional reaction in someone, doesn’t mean they will change their behaviour as a result. Climate despair goes beyond worry’s that a warming planet will force us to make difficult decisions. In the case of coronavirus, previous lockdowns and promises of being “out of this by Christmas” have undoubtedly harmed public trust. In a study into climate despair, data visualizations were presented to test subjects who were urged, in fear-based terms, to take action. Mostly, these appeals produced “denial, apathy, avoidance, and negative accusations”. The researchers concluded that “climate change images can evoke powerful feelings of issue salience, but these do not necessarily make participants feel able to do anything about it” In other words, presenting something in starkly negative and fearful terms forces people to retreat. A common reaction to “there is no solution” is “then there is no problem”. It doesn’t matter how many times you shout ‘danger!’ if people don’t feel like their actions have any difference. News briefings on the pandemic take care to emphasise the seriousness of the situation but make a conscious choice to present a positive outlook for the future. Greta Thunberg is always keen to emphasise that something can be done (although, is keen to emphasise ‘system change’). Being presented solely with pessimism gives us a choice between denialism or despair – between being the man lying down or being the people who initially criticise him. Thankfully, that’s not a choice we need to make…

Bargaining…

I’ve talked a lot about the subject of adapting to transitions as an autistic person. Well, as well as being an autistic issue, it’s a distinctly human one. When confronted with a change, we eventually accept the inevitable, before trying to capture the last fragments of normality that we might find for a while. When we knew that lockdowns were coming, many still spent the weeks leading up to them as if they were like any other. You may have heard people downplay the impacts of climate change by focussing on “better weather”. The key component of this reaction is the attempt to feel better, to avoid facing the loss. For autistic people those feelings of dislocation and denial can be especially prevalent.

This might be why commentators like Bryant associate climate grief with privilege. They argue that we can only ‘bargain’ about things like global warming when we have the luxury to avoid its consequences. How someone in Latin America experiences atmospheric warming will be different from how someone living in the UK experiences atmospheric warming, and the emotional response will be different because of that. An autistic or disabled person living in shared accommodation and unable to access the same level of support as they are usually able to, will experience lockdown in a very different way from someone who is able bodied or neurotypical. When we notice ourselves bargaining, it is perhaps worth asking whether we are bargaining for our own peace of mind at the expense of “invisible” groups

Interestingly, early theories of grief do not discuss social grief but say things which can be applied to the environment or the pandemic. William Worden and Thomas Attig argued that one of the key tasks in a grief process is “the adjustment to a new environment” or new way of behaving. They described the whole grief process as “relearning the world”. Something has profoundly changed, something or someone is either lost or in the process of going away, and grief can help to us adjust. When they were writing they used the death of a loved one as an example, but their work is strangely applicable on a larger scale. Both pandemics and climate change require us to change our behaviour and relearn our ways of thinking. I think if this pandemic has changed anything it’s the way people think about the world around them: how we shouldn’t take anything as given, and how we can never put our faith in stability again.

Acceptance…

The original Kubler-Ross model of grief was again based on very personal matters and talked the calm acceptance of the inevitability of death. However, here’s where we’ve got to draw a distinction between despair and grief. The later says that ‘there is nothing we can do anymore. The apocalypse is coming. It’s too late’. The former is far more cathartic. If you want something that will really depress you, just read ‘Deep Adaptation: A Map for Navigating Climate Tragedy’, by Cumbria University professor Jem Bendell. The paper takes as its starting point the assumption that societal collapse is on its way. Its been rightly pilloried for being quite oversimplistic and for the use of hyperbolic assertations like “You will fear being violently killed before starving to death.”. Many also called the paper irresponsible accusing the piece of spreading despair, not grief.

When we lose a loved one its obviously very tragic but there are harmful and healthy ways to deal with that tragedy. Grief over human life is assigned a series of stages but is really considered a legitimate reaction to social issues like climate change or pandemics. Kriss Kevorkian – an expert in bereavement – notes that we lack the language to describe the feelings of loss that come from watching the destruction of species or mass loss of human life. This is called ‘disenfranchised grief’ – i.e feelings that we don’t acknowledge because they don’t fit within our traditional ideas of what those emotions are, or what causes them. A 2012 National Wildlife Federation report on the psychological effects of climate change estimates that 200 million Americans will be exposed to serious psychological distress from climate-related events and incidents. “This anxiety will increase as reports of the gravity of our condition become clearer and starker.”

An Atypical Perspective…

It goes without saying that I suffer from a lot of social grief. I described earlier how, as an autistic person who views myself part of a large ecosystem and a society, seeing that fall apart upsets me, quite a lot. One way I deal with this is maintaining a healthy emotional distance, trying not to look at the news or social media too much. However, as much as that has its positives, its quite limited as a strategy. So, what do I sometimes do in order to process my emotions on the climate or the pandemic? I grieve. I often temporarily allow myself to give into those emotions and acknowledge how fucking bad everything can seem. This isn’t the same as wallowing in despair. It’s a healthy acknowledgment of your emotions. A moment of saying ‘this is how I feel’ so that we may move on and use that acknowledgment to help affect change.

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.

Don’t Shout, Listen: Why my opinion on race issues is not needed

As I write this, the death of George Floyd has just been certified as homicide. The report states that his death was caused by Cardiac Arrest triggered by a police officer compressing his neck for more than eight minutes, while he was being restrained. The murder has sparked protests internationally.

I’m not about to get into the politics – to clarify, those discussions are important to have, but because my commentary isn’t needed. If reality is determined by historical context, then what happened to Floyd, and Trump holding up a bible as the country went up in flames is a fragment in a history of stories of struggles against racism, that are not mine to tell.

I call myself an ally of Black Lives Matter, and I think that the phrase ‘all lives matter’ is often a racist attempt to detract from the suffering that people in their position dont understand.

In understanding communication- which is something I have personally struggled with – I learnt about listening, understanding when my place in a conversation wasn’t needed. I also struggle with multiple voices speaking at once, often wanting to cut through the noise and hear off the people with the expertise.

In discussions of this issue, this is a point where I should stop shouting, and listen. There are multiple citations from writers of colour in this article. I have provided links to each one of them. Their stories are better told in their own voices. I hope you find them valuable.

Everyone’s Problem

Racism is ‘everyone’s problem’. Don’t misread my view as ‘White people do not have a role in issues of racism’. We do have a role to play, and examining yourself for the preconceptions you have of different races, words you use and racist sentiments which you over-hear and ignore, can be useful.

However, Ijeoma Oluo argues that a lot of the discussion from white people on racism focuses on how they can feel validated while ignoring the structures and systems they benefit from. She recalls that she was once told ‘this is very interesting, but its not going to help me make more black friends’

“Just once I want to speak to a room of white people who know they are there because they are the problem. Who know they are there to begin the work of seeing where they have been complicit and harmful so that they can start doing better. Because white supremacy is their construct, a construct they have benefited from, and deconstructing white supremacy is their duty”

Oluo, confronting racism is not about the needs and feelings of white people
Spot the difference

I have the privilege of witnessing media blatantly which favours my race, e.g in portraying the protests by people of colour as inherently violent. I probably have a generally more positive relationship with the police than many people of colour. Also, as well as being generally poorer, BAME minorities often suffer with worse health outcomes, including being at a higher risk of diseases like Covid-19, and having more trouble getting stamented for disabilities like autism, in some parts of the world.

My response when I’m told any of this should not be to shut up shop and say ‘yeah, well, I had negative experiences with autism’, but to realise the way I slot into the bigger picture as a white person, not to go through each day being proud that I’m not a racist.

In his essay on ‘White Fragility’ Robin DiAngelo argues that the process of realising racism as your responsibility need not be a self righteous process

“although all individuals play a role in keeping the system active, the responsibility for change is not equally shared. White racism is ultimately a white problem and the burden for interrupting it belongs to white people. Conversations about Whiteness might best happen within the context of a larger conversation about racism. It is useful to start at the micro level of analysis, and move to the macro, from the individual out to the interpersonal, societal and institutional”

DiAngrlo, White Fragility

Perhaps if we have a racist perception we can notice it and rather than suppressing that thought, ask why it exists and where it came from. It may be the case that aspects like media representation have altered your perception of how you see people of different ethnicities, and made you take a stereotypical, or discriminatory point of view.

My Opinion Doesn’t Matter

“Amid every conversation about nice white people feeling silenced by conversations about race, there is a sort of ironic and glaring lack of understanding or empathy for those of us who have been visibly marked out as different for our entire lives, and live the consequences. It’s truly a lifetime of self-censorship that people of colour have to live. The options are: speak your truth and face the reprisals, or bite your tongue and get ahead in life. It must be a strange life, always having permission to speak and feeling indignant when you’re finally asked to listen. It stems from white people’s never-questioned entitlement, I suppose”

Eddo-Lodge, Why I’m no longer talking to white people about race

Hopefully I’ve established that even though we all have a responsibility to stamp out racism; white people and people of colour are still often not aligned in that disscussion. People experience the world differently.

My responsibilty is not to go ‘well I think racism is this…’ but to question my own biases, ask why they are there, and not shout over people of colour when they get an opportunity to speak about these issues. That way I can be an ally in a disscussion I’m actually incapable of being an expert on.

This is not to speak for the experiences of all people of a certain race – I’m obviously not doing that. I’m sure a few people will be tempted to explain how they ‘don’t see colour’, however:

“Racism – both the personal kind and the systemic kind– isn’t necessarily triggered by the visual cue of another person’s skin color. Racism is about the social value we assign to people and their actions based on their physical attributes, and neither blind nor colorblind people avoid that acculturation just because they lack the visual cues”

Zach Stafford, When you say you ‘don’t see race’, you’re ignoring racism, not helping to solve it

So no, my opinion on the killing of George Floyd doesn’t matter. I hope I’ve made my readers think about some of these issues, but I wont be the one to lead the disscussion on them.

An Atypical Perspective…

Perspectives aren’t always equal: A fact which can be difficult to comprehend, especially if you struggle with cues, is that people may be coming at a situation from wildly different perspectives relating to their experiences. Realising our place in the discussion and knowing when to shut up, is vital to creating a safe and understanding disscussion on race.

Analyse your behaviours: I’m skilled at analysis. Finding small details and digging deeper to question their meaning. In a sense, we should all be applying that level of micro analysis to our biases and questioning racism even if there’s a nudge and a wink, or an ‘I’m not racist, but…’. It might be the case that you can trace those views back to the media you consume or the privileges afforded to you, yet recognising that can be important in realising wider forms of systemic oppression.

Dont Shout, listen: When it comes to conversations about topics, we’re already in a very crowded room. To shout over the noise with your view is tempting but unhelpful. Rather, we should refer to those with experience on the matter. Many people of colour are cut out of these discussions. Listening to them is therefore vital in stopping racism.

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’.