A Fear of Disability (part two): media ableism

In part one of this series, I discussed the origins of the modern anti-vaccine movement, particularly focusing on Andrew Wakefield’s now discredited study claiming that vaccines cause autism. This part of the blog post will look at very different media responses, asking why Wakefield was allowed to have his views so widely promoted. Its worth noting that as inaccurate as the study was, and as fraudulent and abusive as its methods ‘might have‘ been, movements against vaccines don’t start because of a study. Most of the people protesting the vaccine didn’t read the paper, and sadly most of the journalists reporting Wakefield’s claims didn’t either – it wasn’t so much the content of the study which mattered to Wakefield and Richard Barr – the lawyer who was paying him – but the existence of the study.

The media still sometimes look to cure autism. Case in point – in 2019 ‘Get Well’ magazine published a cover that read “Reversing autism – reigniting your child’s brain”. Inside were pages of pseudoscientific nonsense on ‘autism recovery’ and how the brain can ‘feel its way back’. This would have probably gone under the radar if it weren’t for Sophie Walker who tweeted the following:

This is not how a healthy media discusses autism. Autistic people have to learn to deal with a society that so often feels rigged against them, only to be confronted with the idea that thier brain need’s ‘ignition’. It says a lot about how we think about neurodivergence that some talk about risking measles or covid as a sensible and necessary alternative to thier child being autistic! Sadly, Get Well didn’t recognize that with a response that could have been written by Wakefield himself: “They want to shut down the debate and deny genuine hope to people who are seeking ways to improve their lives and those of their children”

Part of the reason headlines like these are effective is that outrage is built into thier DNA. For many journalists reporting the vaccine scare as fact, the threat of being seen to ignore a potential risk was too tantalizing. “Child vaccine linked to autism” – that was BBC news. “New evidence links MMR to autism” – The Sun. “MMR Safe? Baloney” – Daily Mail. Everywhere you looked there were news reels showing images of crying children. Either that or it was Wakefield talking about having ‘sufficient anxiety’ about the MMR jab and recommending people get the separate measles vaccine, which he patented. I was growing up in the mid 2000s, and becoming conscious of my autism. I don’t remember much of the news reports but I do remember the images of sharp needles being broadcast and people talking about the vaccine threat as something tangible. This was the same time when autism was widely assumed to be male-only, and society was only beginning to see past the theories developed by Kanner and Asperger. It unnerves me to think I was growing up in a time when some in the media were calling into question part of what defines me as a person!

Vaccine Hysteria…

The influence of Wakefield’s study cannot be understated. Research from Cardiff University undertaken in 2003, point to how most people at the time wrongly believed that doctors and scientists are equally divided over the safety of the MMR vaccine. In effect the media falsely created the impression that the medical establishment was split down the middle in spite of almost all doctors doubting Wakefield’s study. The media outlets who promoted the paper would argue that they gave equal coverage to both sides of the argument and therefore were being balanced. However, this ignores the fact that giving equal credence to two sides of a story is a biased act in itself, as that treats those contrasting view points as equally valid. ‘Impartiality’, insofar as that actually exists, is not the blind reporting of ‘both sides’ but the attempt to use ‘unbiased’ and fair investigation methods as a means of finding ‘the truth’. As Nick Davies explains, thats neutrality, not objectivity:

“Neutrality requires the journalist to become invisible, to refrain deliberately, from expressing the judgements which are essential for journalism. Neutrality requires the packaging of conflicting claims, which is precisely the opposite of truth telling. If two men go to mow a meadow an done comes back and says ‘the job’s done’ and the other cones back and says ‘we never cut a single blade of grass’, neutrality requires the journalist to report a controversy surrounding the state of the meadow, to throw together both men’s claims and shove it out to the world with an implicit sign over the top declaring ‘we don’t know what’s happening – you decide”

Nick Davies, Flat Earth News

This is exactly what happened with Wakefield’s study. Research from the Open University found that the source of the claim that ‘MMR causes autism’ – Andrew Wakefield’s paper – is mentioned in only a quarter of the 561 stories they recorded. Coverage of the controversy compounded fears. “Ministers continue to insist the MMR jab which some doctors have linked to autism is the best way of protecting children” – ITV News, “The government has mounted campaigns to persuade parents” – The Times, “New health fears over big surge in autism” – the Observer. These give both views but they are clearly not unbiased as they play into existing fears of authority and an ignorance of the science which launched the anti vaccine movement. Indeed, the framework here clearly places the burden of proof on the side of those defending the MMR vaccine!

I cannot stress enough how more than Y2K and the Great Moon Hoax of 1835, this is truly an example of media failing in thier commitment to be responsible. 53% of people surveyed in the Cardiff work assumed that because both sides of the debate received equal media coverage, there must be equal evidence. Only 23% of the population were aware that the bulk of evidence favoured supporters of the vaccine. This wasn’t helped by the fact that Wakefield’s study was accompanied by an immediate press conference where he told the world about his ‘bold’ theory.

The media coverage caused lot’s of parents to be concerned and plenty to not give thier child the vaccine. There was also a political aspect to the story – although it wasn’t until later that Wakefield became an unbridled peddler of conspiracy theories, the deeply populist idea that the medical establishment weren’t listening to parents was always a core part of his pitch. Prime Minister Tony Blair came under pressure in parliament to reveal whether his three-year-old son had received the jab. He refused to disclose this. As a result, national take-up of the MMR jab dropped from around 90% in 1998 to less than 80% in 2003. I would remind everyone that had most journalists looked into the source of the funding, Wakefield’s alternative vaccine patent or into the practices of the study itself, they might have arrived at very different conclusions.

Confidence in the MMR vaccine, and indeed other vaccines has never fully recovered. An outbreak of measles among the American-Somali community in Minnesota was caused by doubts about the MMR vaccine. Wakefield had been a visitor to the community seven years earlier, talking to them about the risk of autism. That same year there were large outbreaks in one in four European countries with over 20,000 cases of measles, and 35 lives lost. If it weren’t for Wakefield we could be well on our way to eradicating measles. Sadly, the deeply ableist anti vaccine-movement which is spearheaded by him, continues to risk the lives of children around the world.

Exposing Andrew Wakefield…

While many journalists reported Wakefield’s findings as fact, its important to remember its wasn’t every journalist. Jon Snow gave him a fairly rigorous interview, and some outlets focused more heavily on he fact that the theories weren’t popular with the scientific community. However, only one journalist went to investigative lengths to expose Wakefield’s lies – introducing Brian Deer. He found that the aim was to ‘discover’ a “new syndrome”, intended to justify litigation on behalf of thousands of British families, recruited through media stories. It was also him who found out about Wakefield’s alternative vaccine patent. This led to public uproar in Britain, the retraction of the Lancet report’s conclusions section, and, from July 2007 to May 2010, the longest-ever misconduct hearing by the UK’s General Medical Council.

Wakefield never agreed to an interview with Deer. However, there was a moment where Deer was able to confront him. Wakefield ran away:

More than the many examples of lying, it was Deer who discovered that Barr paid Wakefield with money from the UK legal aid fund: run by the government to give poorer people access to justice. Wakefield charged at the extraordinary rate of £150 an hour. The law in the UK requires doctors to state potential conflicts of interest in thier work – these payments were completely undeclared, despite the fact that Wakefield and his team took £26m of taxpayers’ money trying to prove that MMR caused a new “syndrome” which the doctor had already dubbed ‘autistic enterocolitis’ before he performed the research which purportedly discovered it. Do you see why I view the fact that few journalists were discussing this as strange? The Barr-Wakefield deal was the foundation of a vaccine crisis that would continue to have lasting ramifications, and yet the worlds media barely reported the evidence.

Wakefield understood how much money he could make from the scare he started and sought to exploit that. He falsely denied the existence of an alternative vaccine patent but a peek behind the curtain showed that here was even more than that at play. He had set up a network of companies intended to raise money for numerous schemes including autism testing kits and even a cure for autism which were all set out in confidential documents obtained by Deer. He triggered a moral panic and even before he was struck off the medical register, he planned to make millions from that. I’m thankful that he wasn’t successful in making his ideas mainstream, even if he continues to profit from talks to conspiracy theorists.

Regarding the battery of invasive procedures which the children in the study underwent, this sort of research is governed under international law by the Helsinki Declaration. There is no way any ethics committee or board would have approved a regime of risky operations for what was essentially a trial study, but Wakefield needed that approval for his study to be published. What did he do to get around this? Well, he simply lied, reporting that these procedures had been approved by his hospital! Despite denials, no such approval had ever been given.

In response to Deer’s investigation, Wakefield denied any conflicts of interest, even going so far as to deny that he ever said that MMR jabs cause autism. This was despite the fact that he was at this time continuing to produce reports arguing for his theories from Thoughtful House in Texas – an organisation he set up after refusing to do a larger study into his ideas, got him fired from the Royal Free hospital in 2001. Needless to say throughout the investigation, the former doctor acted like an unrepentant child, refusing to cooperate and denying every accusations all while his supporters hurled slurs.

Its worth pointing out that for as much influence as Wakefield’s theories had, with help from the media, Brian Deer’s theories were just as important, seeing media coverage around the world. In 2004, the prime minister of the UK came forward to make a statement about the importance of getting the MMR jab, the case against the vaccine collapsed relegating anti-vaxxers to a fringe if still far too influential minority. Vaccination levels rebounded. In the US, the academy of pediatrics stated in response to Deer’s work that “numerous studies have refuted Andrew Wakefield’s theory that MMR vaccine is linked to bowel disorders and autism. Every aspect of Dr Wakefield’s theory has been disproven”

An Atypical Perspective…

Wakefield’s success always depended on the fact that he would have a captive audience. That’s why he hosted a press conference on almost immediately after releasing his study. That’s why he fled from Deer rather than being asked difficult questions. he knew that he wouldn’t have medical opinion behind him so he needed ‘public opinion’ to give his idea legitimacy. It was journalism, of a sort, which elevated him to rockstar status and even saw a 2003 film called ‘hear the silence’ being made, where Hugh Bonneville played a heroic Wakefield rebelling against a shadowy cabal of physicians and government agents. However, it’s also journalism which brought him down and exposed the man as a ‘liar and a fraud’, making sure that no attempt to replicate his findings would ever be successful.

This to me highlights the power of public persuasion. The perception of vaccines didn’t just change, the perception of autism did too. If autism is perceived to be something which occurs unnaturally that with that unfortunately comes the question of ‘what do we do about the autism epidemic?’. However, if its something that occurs naturally – which we know to be a fact – then the question should become ‘how can we help whilst also accepting autistic people?’. And just like that, we’re back to the medicalist vs. neurodiversity debate. There are some outlets who are still keen to shift the conversation in the direction of the former. That Get Well cover is far from an isolated incident and there are plenty of cases where an autistic person is reported to have done something wrong with particular regard to thier condition. The media’s responsibility in my view has to be pushing towards dismantling the barriers which cause autisitc people to struggle and debunking the misconceptions about autism which enable people like Wakefield to flourish. There are plenty of independent content creators doing this and I’m happy to add my voice to the conversation. Crucially, to stop history repeating itself we need to adopt a neurodiverse led conception of neurodiversity, into the wider conversation. Journalism presents boundless potential for that.

The third and final blog post in this series will look at combatting conspiracies and debunking myths about autism.

A Fear of Disability (part one): The roots of the anti-vaccine movement

I would like to start this blog by saying that if you’ve not done so already, get your Covid vaccine when the time comes (unless you’ve got some legitimate medical reason not to). My autism of course means I’m very sensitive to certain textures and one of them is needles. I was terrified of having a needle stuck in my arm ahead of the time, to the extent that the nurse had to calm me down. However, if you think this isn’t aiding in your anxiety towards the vaccine, here’s the catch – the jab doesn’t hurt. Like, at all. Despite all the worry its probably the most non-painful vaccine I’ve ever had in my life, which shows that while some anxieties are warranted, others are most certainly not.

This blog post will discuss a very unwarranted and harmful form of vaccine hesitancy indeed. And that is the anti-vaxx movement. While to most reasonable people the fringe mobs protesting the vaccine are ridiculous, as an autistic person I have a particular grudge against the anti-vaccine movement. Anti-vaxxers have not historically constituted a large, vocal or influential minority of the population. That is until one man re-launched the anti-vaccine movement for the 21’st century – Andrew Wakefield. I hesitate to mention his name as any attention given to this person is not deserved and I certainly will not be validating him with the title ‘Doctor’.

Still, its necessary to mention him for the purposes of showing how ableism lurks at the heart of the anti-vaxx movement and stating the point that how we talk about vaccines underlies our attitude towards the vulnerable. Its important to bear in mind that if you don’t want to get the vaccine because of some toxic rumor that you’ve heard online, you are not just failing to protect yourself, you are failing to protect people more vulnerable to this virus than you are. Whatsmore, if you want to get back to normal but aren’t prepared to aid in that by getting your jab, bear in mind that there are people on the spectrum and with other disabilities who have been isolated for over a year due to not being able to access the appropriate support. Even though everyone is offered this vaccine on a voluntary basis, for most it is a uniquely privileged position to even consider not getting the jab. It is for the sake of other peoples safety and wellbeing, as well as yourself, that immunisation is available to you. The vaccine rollout will allow us to live our lives again but as that happens, be thankful to all the people who have got the vaccine so you could resume “normal” life, including those who weren’t so often afforded the privilege of freedom before the pandemic!

With all that in mind, I would like to delve deeper into the origins of the anti-vaxx movement and in doing so examine the myths and rumors about autism which made Wakefield’s views initially appeal to so many. If you’re reading this and worried that you thought “maybe there’s something to what he says” at the time, I’m not angry – when almost the entire media is broadcasting the views of a man who has been certified an expert, I can’t blame anyone for being initially curious. All I’ll say is I hope you know better now, and I hope this blog can teach you some more about attitudes towards autistic people.

Fake Science and ‘Fraud’…

Returning to Wakefield’s now retracted Lancet-published study claiming that the MMR vaccine causes autism, many may see this as a medical faux-pas. However, a look into the circumstances surrounding the study speak of a process that was drenched in misinformation. An investigation from the British General Medical Council found that Wakefield failed to disclose that he had filed a patent for a competing vaccine, 6 months before his study was released. More than that, he was receiving money from a lawyer – Richard Barr – representing parents who believed thier child had been harmed by the jab. He wanted to prove that vaccines damaged children by causing autism but seen as there was no evidence for this, he paid Wakefield to find some. A letter sent from Barr to Wakefield reads “The prime objective is to produce unassailable evidence as to convince a court that the vaccines are dangerous”.

In the first line of the studies findings it says that “Onset of behavioral symptoms was associated by the parents with measles mumps and rubella vaccination in eight of 12 children”. There’s two problems standing out here. One is the very small sample size this is drawing from and the second is the line ‘by the parents’ – anyone can be made to associate anyone with anything if you look hard enough. If you develop a cold you’ll probably try and think of where you were yesterday that could have caused you to be infected. You’re less likely to remember people coughing near you three weeks ago. And this is a common problem in autism material – a lot of autism resources you will find online, especially that which views autism in a negative way, tends to be aimed at distressed parents. That is the case with bloggers who write about how to deal with an autistic child and its also the case for people who try and sell pseudoscientific cures. My argument is that this study weaponized parents uncertainty by getting them to associate the child’s autism with the MMR vaccine as a cover for proper scientific analysis, or investigation.

Lines like “he received a dose of the MMR vaccine…the day after which his mother described a striking deterioration in his behaviour that she did link with the immunization” speak of a deeply opinion led process, based off a preexisting bias towards wanting to ‘blame’ something for the autism. The study also details how long the parents noticed autism symptoms after the jab. Unsurprisingly, it’s days, single weeks and even hours. I daresay that some of those parents were looking for autism in thier children more closely considering the hysteria surrounding Wakefield’s report. I bring this up because when you hear the ‘first symptoms’ of autism being mentioned, bear in mind that its from someone’s perspective and not a way to measure how long someone has had autism or where the autism came from. Typically, signs of autism become noticeable at around twelve to eighteen months. However, if you want to blame external factors for causing autism, playing around with parents perception of time and what they remember in order to get them to blame what is in the case of the MMR vaccine, a coincidental event, can be persuasive. Another parent in the study blames thier child’s autism on an ear infection and you don’t hear that being debated or considered legitimate.

The study even admits at the end that it dosent prove that there is a connection between the MMR jab and autism, but the sheer existence of the study mixed with the speculation that the jabs ‘might’ cause autism was enough for Wakefield. By admitting that he hadn’t claimed to prove anything, he could then speculate wildly. For example, each of the children in the study appeared to have non specific bowel disorders. Wakefield takes this collection of vague disorders and concludes “We have identified a chronic enterocolitis (inflammation of the bowels) in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after the measles mumps and rubella vaccine. Further investigations are needed”. To clarify, these uncertain, deeply speculative theories are his conclusions! If the kids each had different bowel disorders than there wouldn’t be a clear link to the vaccine but if they each had a new, novel bowel disorder, Andrew Wakefield could argue that they were all caused by the same thing. He even went as far as to sack two separate doctors who ruled out colitis in over half of the children before writing in his report that 11 of the 12 children had similar inflammation. In effect, he ignored everyone on his team who disagreed with him and decided by himself to invent a new gut disorder that causes autism!

What the evidence said…

Content Warning: Abuse, Medical Procedures

In investigating Wakefield’s work, the journalist Brian Deer – who obtained the medical records after Wakefield himself tried to sue the journalist, only to have the judge rule that the records were evidence in the case – showed the parent of patient 11 what the study said about their child. In a correspondence with Deer the parent noted that

“The Lancet article indicates that autisitc symptoms started at 15 months, a week after the MMR vaccine, which is completely inaccurate…the bottom line is, if my son is indeed patient 11, then the Lancet article made a false assertion that his symptoms set in immediately after the MMR in service of some attorney’s efforts to prove ‘causation’ that apparently drove this research”

Parent of Patient 11

He wasn’t the only parent who was lied to. For the study to be legally useful there needed to be something of a clear link between autism and the vaccine. According to the medical records, most of the parents never said that thier child starting showing signs of autism within the time period of 14 days after they vaccinated, despite the study claiming that they did. Most of the symptoms either started far too late to be useful in the lawsuit or far too soon. Wakefield changed the allegations of the parents so the paper said what he needed it to say. This is despite his constant assertions that he was ‘listening to the parents’ and representing their interests. Furthermore, all of the children in the study had obviously been diagnosed with autism, right? Well, no, actually. Child seven was never diagnosed with autism. Child 12 had also never been given an autism diagnoses. If this sounds absurd to you, rest assured, I was also shocked to find out that some of the people alleged to be autistic, in a study claiming to show a link between vaccines and autism, weren’t ever given a diagnoses! That said, I hope you can realise the depth of Wakefield’s lies in this in that nearly everything surrounding his study was either fabricated or exaggerated, just so he could make money from the innate ableism of a small group of parents and in doing so spread this prejudice far and wide.

Somehow though, for as angry as all of that makes me, the lies weren’t the most infuriating part of his study. In his efforts to link autism and bowel disorders, each child went through a range of dangerous procedures designed – he told their parents – to find that link. The children spent a week at the hospital during which time they were given laxatives’ and sedated as well as being given colonoscopies, having needles injected between the bones of their spine and having wires run through their head. On the consent hand-out Wakefield provided for parents, none of the risks of any of the procedures are mentioned. As a result, one five year old autistic boy was given a colonoscopy that caused his bowel to be perforated in 12 places during the procedure, resulting in lifelong disabilities that require full time care. Another child’s lumbar puncture went incredibly badly, meaning he had to be rushed to a different hospital for treatment. These children were subjected to incredibly risky and invasive procedures for no reason other than satisfying a now disgraced ex-doctor’s need to appear credible which he needed to sustain a profit motive. If you’re supporting Wakefield you’re not only supporting someone who is ‘in my opinion’ a lying conman, but someone who ‘might have‘ been guilty of child abuse. In another harrowing and creepy story which Wakefield used to tell himself, at his son’s birthday party he lined up all the other kids and offered them five pounds each for samples of their blood, so he could compare the blood of ‘normal’ children with that of those he claimed had ‘autistic enterocolitis’. Let that be testament to this man’s trustworthiness, or lack thereof.

It was all very clever in a sickening sort of way. A group of parents who thought vaccines might cause autism, payed a lawyer to represent them who then payed Wakefield to write those opinions in a study, using the link of ‘enterocolitis’ as a lynchpin to produce the ‘evidence’ the lawyer needed. To reach these findings, Wakefield was prepared to go to extreme and deeply immoral lengths. Perhaps the only thing more vile than that is that his theories still hold sway for a more significant number of people than I care to think on. I will focus on that more in future blog posts but for now, let me introduce the discussion…

A high profile example…

Upon learning that they have an autistic child there a few reactions parents can have – while we hope the condition will be met with acceptance, its likely that there will be a degree of uncertainty that comes with that. Every parent has hopes and ambitions associated with thier child. So upon learning that thier child is different comes uncertainty about thier future, and with that the desire for an explanation for why thier child is this way – something not helped by an unhealthy lack of education about autism, either in the media or in education. Its easy to see how then many could have been convinced by someone offering to explain why autism happens.

Today the anti-vaccination movement weaponizes the lack of public knowledge about infectious diseases and vaccines, combining that with existing fears of imposing governmental powers. A 2016 documentary produced by Wakefield titled ‘Vaxxed: From Cover Up to Catastrophe’ argued that vaccines are a result of a larger government conspiracy to make children ill to sustain a medical-industrial complex. That same year Donald Trump stood on a platform with many other republican party candidates vying to stand in the presidential elections, and stated his view that vaccines caused autism. It’s worth pointing out that his administration presided over an alarming number of measles and mumps outbreaks, driven in part by vaccine hesitancy. This is quite a common trend. Vaccine hesitancy increased after Wakefield’s paper which proves what a powerful tool information, or indeed disinformation, can be in public health.

In 2016, Wakefield was one of four anti-vaccine campaigners who met with Donald Trump. The disgraced doctor turned conspiracy theorist also attended one of his inauguration balls, after he defeated Hillary Clinton in the presidential election. After he entered the White House, Trump is said to have considered appointing another vaccine sceptic, Robert F Kennedy, to head a commission to look into their safety. I am stressing this because vaccine skepticism is often seen as a fringe movement, yet its important to see the idea as having potential to be far more influential and dangerous.

“Despite the fact that his findings were found to be fraudulent, the paper was retracted and that Wakefield was struck-off the medical register for dishonesty, the damage was done. Public confidence in MMR and vaccination has never fully recovered, at least not in developed countries. This was made evident by recent news that the number of measles cases in Europe increased by 400 per cent in 2017, with more than 20,000 cases and 35 needless deaths”

Seth Berkley, Global Alliance for Vaccines and Immunization

Trump’s view might have been driven in part by his business friendship with Bob Wright – former chairman of NBC and founder of ‘Autism Speaks’. Remember what I said about many parents fearing for the future as a result of an autism diagnoses? This is fed into by organizations like Cure Autism Now and Defeat Autism who emphasise the ‘tragedy of disability’. Autism Speaks’ 2015 marketing campaign proudly stated their aim to create a world where “no family has to live with autism” this reinforced to many parents and ASD individuals that eradication of the disorder was the penultimate goal, which set them apart from the many other advocacy organizations. This is a conflict at the heart of disability politics….

An Atypical Perspective…

This discrepancy between people who view autism as something scary to be explained or else cured, and people prepared to accept autism as a positive neurological difference points to the rift at the heart of discussions around the condition: the ‘medicalized’ view that states that autism is an affliction to be treated and cured, and the ‘neurodiversity’ advocates who say that the disabling aspects of autism lie in how society behaves towards us. Many parents were convinced by Wakefield’s deeply medical view of autism, that being that the condition was caused by vaccines. In instilling people with this fear he created a movement that only works to reinforce the factors which cause autistic people to struggle – job market discrimination, inaccessible language, poor mental health funding. He did this, by portraying ASD as a disease and by extension something to be feared. My argument is that as long as this stigma exists you are going to have conspiracy theorists claiming to know what causes autism. If we want to get rid of those ideas we have to get rid of the far tamer yet no less dangerous view that neurodiversity requires and explanation, and deserves to be treated as a problem.

In my next blog post we will look at the media and the role of journalists in discussing autism and vaccines.

A Story of Sensory Chaos (And what I learned)

Longtime readers of this blog may have read my piece on ‘a day of escape’ – a piece of prose in which, using grandiloquent language, I described a trip to a beach and the ruins of a chapel as a chance for me to mentally escape the turmoil wrought by lockdowns and coronavirus. A few weekends ago as I write this, I returned to rhossili bay with my family, partly in the hope of reminding myself of that sensation of feeling the worry’s of the world lift from my shoulders. As an autistic, I get very attached to places and people that I have positive memories of and so trying to replicate those experiences becomes part of my routine as I associate them with my confidence as a person. The opposite can also be true of places and people I have had negative experiences with.

One thing to bear in mind though is how different the situation was this time around. Last time, was a welcome opportunity to escape in the face of apocalyptic boredom. This time we hadn’t been in lockdown for quite a few weeks. In the space of a few weeks I’d retuned to my work routine, eaten inside pubs, browsed shops, been to the cinema and yes, had my first dose of the vaccine. Needless to say, I have enjoyed a return to some form of normality, because as well as being strange its given me a chance to creatively, emotionally and physically stimulate myself. Sitting at home may be less overwhelming but its far less invigorating. However, although I didn’t really notice it at the time, in those weeks when my life returned to normal, something was happening to me mentally.

Background

See, while I love socializing and being around people, I also need an opportunity to wind down and recover from all that sensory stimulation. This is old ground to me and many of my readers so forgive the quick explanations, but to put it simply the social-exhaustion was beginning to set in. It didn’t help that the weather was absolutely boiling (one sensory experience which does bother me is overwhelming heat. On sunny days, people who ‘like’ the heat go to the beach or the swimming pool to ‘cool down’. Autistics find this contradiction strange). As a combination of those factors I was strangely distant for most of the day – neurotypicals tend to mistake this distance as being upset or having something specific on my mind, meaning I need people looking after me. This is rarely the case. Rather, the ‘withdrawals’ are an attempt to recover from people and a pretty good signal that I’d like to be temporarily left alone.

So, you understand I was already slightly overwhelmed. That said, I had a good time regardless – I went swimming in the sea which might, in contrast to sitting in the sun, be one of my favourite sensory experiences, spent time with my family and explored the beach for its shells, markings and shipwrecks. It was, in many respects, a fine day. That was until, something happened which I’ve been thinking about ever since.

We stayed at the beach for a while. The tide was crashing forward further and further, and the last rays of evening were beginning to creep in. in the midst of this, I had this idea about wanting to swim in the cool light of evening as the sun cast its shimmering light on to the water. This was as fulfilling as I expected – mid-evening is my favourite time of day in the same way as autumn is my favourite season, so I spent a while immersed in the waves. Nothing so far had happened to cease my happiness – it was almost therapeutic in a sense, helping me recover from the mild burnout I’d been experiencing all day.

However, you know that feeling where you get out of the sea and location temporarily dosent seem to exist, as you try and adjust to your surroundings and scan the beach for where your family are. Well this is paticulary a problem on Gower Peninsula, especially when the tide is coming in. My family had started moving while I was with them, and as the tide came further and further in they had to keep moving to areas that would’nt yet been touched by the rush of the water. This is the problem – the beach itself is still absolutely enormous length wise when the tide is almost in, streching for a long distance. Being in the water, I’d lost my sense of time. Now, back on the beach I’d lost the people I was with. If I had to use one word to describe my feelings in this moment that would be ‘disorientated’. That’s important to bear in mind.

What Happened Next

After wandering around the area where I thought my family would be, I saw no sign of them – it later turned out that they were still there but whether it was just my confusion or the fact that they were just too far away, I couldn’t see them and they couldn’t see me. Something else you should know about the beach in question is that its separated from the seaside area by a mountain. The only way down or up is via steep, winding steps. Specifically, steep winding steps that I climbed in nothing other than swimming trunks. As you can imagine I was met with many strange looks. All the while, my worry and dislocation was reaching astronomical heights. I didn’t know what I’d do when I reached the top of these steps. I guess I had a vague hope that I might find my family somewhere in the mountain areas. Someone jokingly asked me if I’d lost a bucket and a spade. I regretfully snapped back in a shouted tone.

In the time following, I stumbled around the seaside area, receiving yet more strange looks, still in swimming trucks. I was visibly quite scared and overwhelmed, reacting to every suddenly amplified noise – the roar of cars leaving a car park, the piercing squawk of a bird, the bustle from a nearby café closing custom for the day. The height from the seaside area to the beach now seemed more dizzying, the setting sun more dazzling. It was getting noticeably colder, and I could feel that I was still wet, all made more poignant by the emotional background of having lost the people I came here with, having no means of contacting them, and not knowing what I was going to do.

There is a gate into the mountains which strech the length of the beach, and into the sea, forming the ‘worms head’- I frantically fumble with the lock for a long time. Looking out into the road ahead, I see no sign of anyone I recognize. Then everything happened very quickly – if you’ve never had a full scale ‘autisitc meltdown’ you can’t know what its like. The best way I can describe it is the sheer overwhelming quality of everything, from your emotions to the heightened sensory environment your in hits you, and you become unable to do anything in response. “FUCKING HELL!” I scream, bashing at the gate before processing to sit down, noticeably very upset and stimming by rocking back and forth and scratching at my skin. I hadn’t experienced an autisitc meltdown on this scale for years – I guess I kind of presumed that I wasn’t going to have them anymore. Its not any more bearable than the last time.

While all of this was going on my dad, obviously incredibly worried about the fact that the last time he saw me was going into the sea, was on the phone to the lifeguard service. I obviously didn’t hear this but from what I’m told the person on the other side of the phone needed to calm my dad down while they enquired about getting a boat ready to come looking for me. That’s one of the most unnerving parts of this story to me – as it turns out, there was not a boat sent out but the fact that there would have been give or take five minutes is incompressible and perplexing to me.

Back to me having a meltdown. Luckily, in the sea of people wondering what was going on, were two people who recognized exactly what was happening the moment they saw me. I didn’t think to ask how but needless to say they were successful in calming me down by talking to me, giving me a jacket to wear, and helping me find my dad’s car, which they had to break into by forcing the window down. Finding the car was not an easy task – I wouldn’t have been able to remember basic directions had someone had the bad sense to ask me for them in that moment. The only coherent descriptor of my dad’s car a had in that moment was ‘red’. Thankfully, I was in a fine enough frame of mind by this time to recognize the car the minute we found where the vehicle was parked. “I hope this is the right one because if its not I’ve just broken into someone’s car” one of the people helping me joked. Significantly calmer but still worried and suffering from the burned-out after effects of meltdown, I explained that I was autisitc to which they said that indicated that they’d noticed. Staying by the car that I was sat in, they phoned the same helpline that my dad had phoned five minutes earlier. Not long afterwards, I was located and the issue was settled.

What We Can Learn

In retelling this story, my mind keeps floating back to the person who mocked me that I again, regret biting back at and the people who eventually helped me. I find an interesting topic of disscussion is how we look upon people who may be perceived to be acting in a strange way. Whether that’s looking disorientated, looking visibly panicked or distressed, there’s a number of reactions. One is just to ignore someone and to be fair thats probably a common reaction, but how many times have you looked upon someone acting in a ‘strange’ way and presumed there must be something wrong with them for thier outward display of whatever’s going through our head. I don’t necessarily blame you if you’ve head that reaction – we tend to judge people by what we can see and hear and in public life there’s a set of criteria about how you should express emotion. Rarely is there a consideration of exactly what a person might be going through, how some people struggle to meet those social expectations of ‘masking’ thier inner thoughts and feelings, or even what kind of day a person might be having.

No one knows this better than autisitc people. With the emotional and physical sensitivity, as well as the social expectation that we need to hide that sensitivity lest we be perceived as ‘weird’ for transgressions of what’s considered ‘acceptable’, its easy for us to have those moments when we just can’t mask anymore. And its not always on the level I experienced at Rhossili Bay. It might just be an act of ‘stimming’, appearing noticeably emotional, or even one of us talking about how we’re feeling in a way that might be called ‘oversharing’. Meltdowns are often conflated with temper tantrums as a way of delegitimizing the experience. However, there was nothing attention seeking about what happened to me. Any attention I did get was the wrong sort and when I finally got some positive attention that was to calm me down from a point of panic and desperation. On that point, I think its worth stressing that not everyone can help when they see someone outwardly expressing themselves. Sometimes to try and help is the wrong response and I count myself incredibly lucky that there were two people who knew how to respond properly when they saw me. I don’t necessarily feel that everyone is obliged to help , simply that more people were considerate and thoughtful when it comes to seeing people experience intense emotions. If we could do that, we could make this a far more accepting world for autisitcs, and others.

Why I Write – A reflection on a year of Atypical Perspectives

“I had the lonely child’s habit of making up stories and holding conversations with imaginary persons, and I think from the very start my literary ambitions were mixed up with the feeling of being isolated and undervalued. I knew that I had a facility with words and a power of facing unpleasant facts, and I felt that this created a sort of private world in which I could get my own back for my failure in everyday life.”

George Orwell, Why I Write

Roughly a year ago I published my first blog post on Atypical Perspectives.

In that blog I talked about ‘making connections’. How as an autistic person I tend to see how seemingly unrelated factors in life like my passion for honesty in journalism, with my aspirations to try and be constantly honest about my abilities. That making connections idea has underpinned all of my work since – even my last blog post was an attempt to draw a comparison between our emotional instincts and our ‘logical’ policy decisions.

Much of my work has focussed on trying to make people understand and care about the politics of disability and show how it effects our day to day lives. The ‘grief’ that comes from a distinctly human response to pandemics and ecological issues, telling us that understanding what our decisions do to people emotionally matters in how we shape our systems and institutions. The obsession with ‘normal’ underpinning the devaluing of disability in aspects of medical policy, and the routine assessment of autistics in order to determine how well we fit into society and how deserving of support as a result. Even my love of music, my confidence, and my issues with mental health are related in the sense that each is influenced by the other.

If you’ve read one of my blog posts you might get a snapshot of me as a person, or of my views on my autism, and even if you read all of them you’ll still only have the vague sketches of me, based on the ‘personal brand’ I’ve cultivated through this blog. I have no qualms with telling people that I started this blog as a means of giving me something to commit to during the pandemic, at a time when my mental health was at a detestably low point. However, over the course of a year its grown into something more than that. A lot of the stuff I’ve written here has been stuff thats been nestling at the back of my mind for a very long time indeed, but that I didn’t know how to articulate. On a base level, talking about my issues with needs assessments, my problem with terms like ‘retard’ or ‘high functioning’ and even my discomfort with the original name of my condition – ‘Asperger Syndrome’, is almost cathartic. I surprised myself with how much I needed to get some of this stuff out of my mind and on to a page.

However, its much more than that – its me trying to get to grips with what the philosophy of ‘normal’ does. Not to sound incredibly cliché, but if you’ve ever been perceived as ‘different’ or ‘weird’ and felt that impact you throughout your life – through applying for a job, through your social interactions, through ways of looking at the world feeling out of sync with ‘the way things are’, I can relate. Indeed, if you have gained greater understanding of how all this stuff is connected and how the use of phrases like ‘abnormal’ of ‘strange’ are indicative of an economic and political reality that rarely welcomes diversity in either identity or in our analysis of social problems, me too. I think its a common misconception that writers have everything in thier head before we start writing: in reality we just have some hastily scrawled observations and an ability to improvise.

I won’t pretend I’m not harsh on myself as a writer – generally, when I’m writing I tend to go through a process of thinking my next blog post is going to be brilliant, thinking its going to be terrible while writing and then realizing at the last minute that its actually okay. Even then, I look back on some articles in an embarrassed way – I stand by a lot of what I said in my blogs on ‘canceling’, the history of autism and ‘the atomic theory of communication’ but theres parts of them that are confused, where I’m not sure what argument I was making or why I’ve put things in the way I have. And while I know that all of my work marks part of my progression as a writer, there’s another side of me that naively believes that perfection is even possible. This is despite the fact that ‘perfection’ is a flawed concept and I know as someone who loves to analyze music and film, that the best pieces have flaws which make up part of thier identity and character. After all, you can’t have a work with the stated intention of relating to people on a human level, and not have that work be as flawed as you and the people your speaking to are.

Like a trap, we’re back to this. The idea that as humans we can have ‘perfect’, we can have ‘normal’ and we can have people and art without any flaws is a toxic one. Whether its in beauty, art or work it creates an artificial standard that’s impossible to achieve, and forces many autistic people to burden themselves with the promise that if they work hard enough they can reach the plain of neurotypical acceptance. At an individual level, if you take one thing from any of my blogs I want it to be that your flaws, your imperfections, aren’t wrong. They are a vital part of being human, of being part of a world that requires all kinds of minds in order to function. That’s not to say you shouldn’t ever try and work over your issues – I have resolved many of the problems with my writing and its all the better for that. However, rather than dread or resent those aspects of us which are called ‘odd’ or ‘different’, we should aim to understand them, so they can be embraced or worked on.

In that sense, I would now like to stop publishing as often as I do. Like I said, I started Atypical Perspectives as a means of coping through lockdown, and so a commitment of one blog every Friday made sense for the circumstances. However, its not a commitment that makes sense anymore and is only going to leave me emotionally drained and burned out. After all, the quality of my work is not going to be determined by how much I do but how I do that work. That’s why I’m not enforcing any set timescale for my blog posts anymore. They won’t become too infrequent but I will not create an ideal vision of what I should be doing and then try and have everything in my life bend to that vision. That would make me almost as bad as the practices I deride.

If you’ve empathized or related to any of my blog posts over the past year, then thank you. I hope they have aided you in finding peace in these difficult times and defying the demands of normality to chart a course that is your own – one that is perfectly and unashamedly ‘atypical’.

Radical Kindness: reimagining support

Lots of talk lately has focussed on embedding kindness into public services; that is to say, making systems for accessing benefits or work accessible to people, starting your interaction with people in desperate situations through the way you speak to and interact with them. Kindness can be something as simple as taking the process of applying for benefits from being one of long forms and complicated words to being one of disscussion between someone who needs help, and a specialist able to understand what the needs are of the person in front of them, although I would add that larger change is required, not just individual ‘disruption’.

The systems we set up relating to disability are perhaps a prime example of how we approach kindness. No one goes into public policy with the stated intention of being unkind, but this relates to how we measure achievement and results. There’s the ‘rational’ measurement of public policy – the concept that everything can be reduced to a scientific ‘facts and numbers’ approach, which follows very conventional ways of doing things. Then there’s the ’emotional’ measurement – this talks about individual wellbeing, relationships, trust, hope. I’ve talked a lot about the tyranny of standard practice on this blog – the tendency to pathologize autism and treat it as a curable curse, measured in ‘severity’ by vague ideas of independence. Its empathy and compassion for autists that has started to liberate from the tyranny of ‘normal’. However, the so called common sense approach persists in autism-politics and other areas.

Some Background…

Many people living with disabilities in the UK for example have had to go through the process of applying for PIP – an overhall of the old system in which a medical recognition of your condition or impairment entitled you to certain benefits. When I did my PIP form, I found the questions to be weirdly vague asking about topics such as ‘nervousness’ and ‘feeling uncertain’. Remember, I was obviously trying to apply to receive Personal Independence Payment. This had the effect of making me almost obsessively pour every negative detail on to the form in the hope that something I said met the criteria. The interview stage was more conversational than expected but not in a good way. On the issue of getting to uni, I was presented with a lot of hypothetical questions aimed at testing my independence: “what would you do if you couldn’t get a lift to the train station?”, “what would you do if the train was cancelled?”, “what would you do if you got the wrong train?”. These are all things I have encountered and oddly enough, overcome but this is nonsense questioning – just because someone might find some areas of life easy, doesn’t mean they wont find other areas challenging. Honing in on a set few areas to see if a person is entitled to long term support is the logical equivalent of making a judgment about someone’s math skills based on thier reading and writing.

When talking about a topic like this, politics is almost impossible to ignore. Of the PIP decisions appealed in court, about 70% of such appeals go in favour of the people who bring them. The most recent controversy in a seemingly never ending list, circled around the Department For Work and Pensions phoning people appealing the decision to deny them benefits, and asking them to decide on the spot whether they want to accept a sum of money lower than that which they’re entitled to. Despite the scheme being set up specifically to stop money being spent on false claims, this is clearly very costly. I became engaged in politics around 2010 when the prevailing narrative was one of schemers and scroungers, “when you get home from work and see your neighbor with his curtains closed” narratives, used to justify the austerity politics of the Tory government. This happened against a background of my dad being unable to work, living in an apartment with my younger sisters. Talking with local people over the course of a few years meant I quickly learned about the different barriers; poor mental health provision, lack of access to technology, bereavement, childcare. Given my struggles with social interaction and anxiety it was always very easy to see how I could end up in a similar situation; among those looked down on.

I think kindness can be both a positive and negative way of talking about how to reform this; on the one hand if we are to change the way we interact with and talk about people we need inherently kinder systems in place. On the other, we need to go beyond kindness and empower people to shape thier work and personal lives in ways that are in defiance – or, to be technical – unkind to those who are not kind to them. Let’s continue to look at this through the lens of autism and disability.

The Problem of Unkindness….

The reason I started this blog by remarking on my experience with the benefit system and being around people in desperate situations is because I think its a perfect example of how the ‘unkind’, target led, punitive approach to public services has failed. The response to Coronavirus has demonstrated the ability to act differently. In the early days of the pandemic there were efforts to make hotel spaces and bedsits available to get homeless people off the streets, and mutual aid groups sprung up around the country giving people supplies and personal support – unfortunately, these have only really been understood up to this point as short term responses to the crisis. Streets are again filling up with homeless people and mutual aid groups have suffered from lost momentum and lack of long term funding. Rather than simply asking people to be kind, radical kindness demands that we identify specifically what areas of life are unkind; risk of homelessness, benefit systems built on assessments and sanctioning, long waiting list for mental health, and working to reshape our societies and relationships along significantly ‘kinder’ lines.

My needs assessments being unkind does not relate to the attitude of the assessor – for what its worth he was alright – but that it was a tick bock excersise based on a series of indicators aimed at deciding whether I’m ‘autistic enough’ and used to determine how much support I could receive. That, alongside the insidious factor that the system is designed to be punitive. As Charlotte Waite from mental health and social change charity platfform states:

“We have a landscape of services where accountability is prioritized over learning in measuring outcomes. The current system offers an overly simplistic way of assessing the work of people who implement public policy by performance-measuring them against quantitative targets. Naturally, wanting to do well, people are driven to hit their targets. And so begins a dance between service and commissioner, where each knows the data is painting a picture more about justifying the existence of the service than making the difference it was intended to make when it was designed”

Charlotte Waite, Kindness in Public Services

At this point people will likely point to the problem of resources, and how we allocate them, and I won’t attempt to answer those questions here except to say that a ‘kinder’ approach to politics, to services, to public life of course involves assessing things on that massive level of how we allocate resources as a means to make our support systems more tailored and able to meet peoples need. However, I often find the way we talk about resources creates an us and them mentality between the people who ‘have’ the resources and service users, who need to live up to the measurements we set to receive support. My argument is that human relationships and the way we think about the ‘helper/helped’ relationship plays an important role in creating kinder systems of support.

A practical alternative?…

I realise an idea as sentimental as ‘kindness’ might be a tough sell for some people, so lets talk a little about the practicalities of the idea. One of the main arguments for the ‘rational’, numbers based approach to doling out support is that it – in principle – ensures fairness, by making sure everyone is assessed equally and subject to the same criteria. It can be verified and provides for fact checking. On that, one of the criticisms of the emotional metric is that its quite sentimental, populist and can’t be measured. Paul Bloom in the affectionately titled Against Empathy argues that it is precisely the role of the state to rise above the challenges and complexity of individual emotion and to instead be structured through a clear framework of rights and responsibilities.

However, this argument doesn’t work when you consider that not everyone has exactly the same needs. Don’t get me wrong everyone deserves to be afforded equal levels of dignity and respect, and with a financial benefit like PIP theres only so much flexibility you can have. However, wider needs assessments relating to precisely what support people receive demands that individual needs are understood and accounted for. Proper autism support does not come from treating every autistic person as if they are the same – some autistic people suffer with chronic mental health problems, some are born into poorer families than others, some are diagnosed and end up receiving thier assessment earlier or later in life than others. How on earth can you treat all these different situations as requiring the same response or the same type of support? This is precisely the opposite of Bloom’s argument – having a system of inflexible rules and ‘standard practice’ dosen’t make sure things are fair but perpetuates the inequalities that already exist.

Whatsmore, to imply that you’ve got the messiness of emotions as one factor and then the sensible level-headed nature of public policy as another is deeply flawed. So much of our public policy and discourse is based on emotion and ideology. Like I said, the discourse surrounding the reason for introducing systems like PIP was that we as a country were too charitable, and that we needed to punish the undeserving. Many autisitc people live in community housing with a few carers and perhaps five or six other autistic people. This is despite the fact that, for many, moving into a care home is recognized as a distressing transition. It comes about because of the recognition of vulnerability, frequently coincides with the death of a parent, often involves moving from the family home at the same time as becoming
used to loss of other sorts – of capability and capacity, of freedom, and of individual autonomy. These examples show how separating emotion and public policy is difficult if not impossible. Rather than trying to sperate them, I argue that we should be trying to understand precisely what emotions motivate our policy decisions and what our decisions do to people on the inside. Not only will that help motivate us to kindness, but will be a kind act in itself.

How precisely do we do that though? You can’t exactly measure kindness, right? Well, this narrative too is quite over simplistic. The argument feels
logical – the rational world of measurement cannot fully meet the emotional world of subjective experience, and no one has yet come up with a way of quantifying emotion down to a specific enough level. However, we measure emotion all the time. Social media has practically built an entire industry off understanding and manipulating how people feel.

“Official statistics measure not just the reported crime rate but also the perception of crime in a neighbourhood, the latter having a
stronger correlation with individual wellbeing. We measure life satisfaction and put great weight on programmes that have proven impact on participants’ satisfaction with their own lives, despite
the fact that objectively we value different things. We measure subjective views on the quality of work, of neighborhoods, of public services, as well as the objective ‘truth’ about these aspects of our lives. So it is not that we cannot measure kindness. It is that we choose not to measure kindness as an official measure of how we are doing as a society”

Kindness, emotions and relationships: The blind spot in public policy

Read the last two sentences again. “It is not that we cannot measure kindness, it is that we choose not to measure kindness as an official measure of how we are doing as a society”. What if we did? If we measured how people feel about thier housing, about thier disability benefit, about thier mental health, what conclusions could we reach? Following that, how would we use that info to enact policy decisions that improve peoples wellbeing and psychological safety? No one is suggesting we abandon statistics and numbers as a useful way of holding the powerful to account, or gauging how society is functioning, or that we allow our emotions to take hold of us and guide our every decision, simply that we stop looking at the two as entirely separate.

An Atypical Perspective

After a year of lockdowns, there is widespread recognition that society needs to change. Ideas like remote working, mutual aid and the protection of vulnerable groups present great opportunities. We also know that huge sections of society feel disenfranchised after losing thier livelihoods, feeling isolated and cut off from society, and not receiving the support they need to get through this crisis in a healthy way. We are tired, we are missing our friends, and we have a hope that we’ll do better in our personal commitments when lockdown ends. Our beliefs and actions are shaped by our emotions – our history, our expectations, our sense of agency – perhaps more than they are by logic and reason. And at times of crisis, our need for a kind response from our politicians and institutions is powerful.

The response needs to be substantial and real. We can’t just rely on individual acts of charity to ensure the wellbeing of our society. Kindness is radical. At its best it demands a change in the relationships between people and those in authority. If those most affected by Covid are not involved in how decisions are made moving forward, yet more trust in the systems we rely on will be lost. We need a new social settlement that realises the importance of emotion and makes sure that decisions, and leadership are rooted in an understanding of how people feel. Only through this, can we inspire people to be better after the pandemic, and achieve lasting change in our communities.

Understanding My Senses: repetition and ‘stimming’

As I write, I am fidgeting with a bracelet. A pair of headphones snakes from my phone to my ears which i cant resist the urge to strech and tie into knots even if that turns listening to music into a more expensive hobby than it already is. Occasionally, I’ll read something interesting that I can use for this blog post, to which I might react with excitable movements or else stare into space if I’m confused by what I’ve found out. I’m also known to rock back and forth when listening to music, or feeling anxious. Anyone watching me in these moments might think I’m acting strange.

What they might not understand is how all those behaviours, to me at least are a reaction to something. They are how I process change and the world around me. I’m not sure exactly why these behaviors help me do that. They just come naturally. Stimming helps me feel grounded when I’m overwhelmed but its also a way I can express my joy, fascination or sadness. The world is louder now, which I like, actually. Having somewhere to go, things to observe, hear and experience on a day to day basis makes me feel intellectually and physically stimulated, even if I do sometimes get overwhelmed. I feel that sometimes people put autisitc people in a box and say that because some of us don’t react well to loud noises or crowds we don’t ever want to be in environments where there is a possibility of loud noises or crowds. On the contrary, if you say you’re an extrovert and say you like to be out and about, your occasional quietness and withdrawn nature might be seen as strange or uncharacteristic. This is despite the fact that humans do not fit neatly into boxes, not least autisitc people.

A shift in the way we see repetitive behaviours as a society is entirely necessary. They contain not only ‘stims’ like rocking back and forth but routines, and special interests like a fixation on music and writing, as is the case with me. Traditionally neuro-scientists like Leo Kanner have viewed them as something to eliminate. However, ideas about repetitive behaviours and what purpose they serve has changed, as ideas about autistic people have progressed.

Interpreting Repetition…

Leo Kanner and Hans Asperger, who originated modern thought on autism even if thier ideas are incredibly outdated and wrong, both saw ‘stimming’ as attempts by autisitc people to shut out the world around them. In the wake of these ideas sprung up a whole subset of pseudo-therapy aimed at reconditioning autistic people. Tactics used included electric shocks and physical restraint, aimed at stopping autisitc people from behaving in ways that were perceived as disruptive and strange. This still goes on to an extent – human rights law prevents the use of physical torture but there are still ‘therapies’ which some children are made to undergo, aimed at eradicating certain character traits or stopping them from being sensitive to certain sounds, textures and atmospheres. If this sounds like social conditioning its because these practices literally emerged out of academic theories which believed that autisitc people should be cured, or else made to ‘fit in’.

Despite this, as anyone who’s ever had a child or younger sibling should know, erratic body movements and repetition are an important part of development as children learn to interact with the world around them. Now, as people learn to better respond to and understand thier environments, thier actions become more purpose based and goal oriented. While I’m cautious of using comparisons to children as a way of describing autism, what if actions like stimming and routines are autistic peoples attempt to make sense of a world that so often seems overwhelming on both a sensory and emotional level? If, for the sake of argument, we assume this to be true, then the entire argument that these behaviours are a symptom of a larger problem with autistic people, falls apart. You can’t on the one hand say that autisitc people should adjust better to thier environment, and then castigate them for thier attempts to do just that.

In fact, a 2014 study appeared to point in this direction. It found that both autisitc and neurotypical children,  continue to engage in repetitive behaviors, such as fiddling with objects, as they grow. People with autism just display more of these behaviors, as well as a greater variety. The aphorism that ‘everyone is a little bit autisitc’ is an annoying one, as well as not being true. However, it is fair to say that we can learn a lot from observing behaviours which appear strange and asking what purpose they serve for the individual, rather than making rash judgements. All this informs how we treat those we perceive as ‘different’.

Understanding ‘Stimming’..

As well as playing important functions during development, stimming helps autisitc people in a number of ways. Many of us stim as a way of coping with overwhelming sensations or emotions. It can also serve as a way of communicating those thoughts and feelings. Psychologist Steven Kapp who studies self-stimulatory behaviour has said that while something like scratching yourself can represent anxiousness, hand flapping is usually a sign of happiness. He sees stims as an outlet for “uncontainable emotion”, not as something worth repressing. And that’s the other reason for repetitive behaviors like these – they feel really good.

This is a point highlighted excellently by neurodivergent blogger Julia Bascom on her piece on how uniquely autisitc body movements as well as special interests and routines are all part of the autistic attempt to make meaning out of life, and not something to be pitied.

“Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day”

Julia Bascom

I can personally relate to this -obviously, Bascom is speaking in very general terms. I personally don’t regard the multiples of seven as beautiful (although speaking as someone who has to have thier watch with them at all times, the multiples of five have something going for them) and that’s okay. Personally, I pity anyone who can’t have a song speak to them on such a deep and powerful level that listening in public requires restraint. I pity anyone who can’t pour thier soul so much into a subject that they want to find out everything it be that politics, journalism or philosophy. My emotions are somewhat volatile so a small thing can make me sad, but a small thing can make me happy. Given that I’m ‘always on’, something as tiny as a change in my environment, a smell, a taste, a sound, a word from someone, can alter my mood exponentially. Repetitive behaviours are a key part of the way I regulate that.

Despite this, I have read many comments written by neurotypical parents desperately trying to stop their child from stimming in an attempt tp make them ‘normal’. I quite regularly receive strange looks from people on train platforms for my inability to stop pacing up and down as I’m waiting. While I get that autisitc traits are not widely understood within society, I have tried to adjust my own mindset to be less presumptuous when I see anyone doing anything that could be perceived as ‘strange’. This highlights how empathy is key to understanding repetitious and obsessive behaviours. I might not relate to some autistic people love of maths and not all forms of ‘stimming’ come naturally to me, but that dosent mean I don’t understand these as autisitc peoples ability to make sense of the world and shape it to thier needs.

“It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echoed phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy”

Julia Bascom

An Atypical perspective….

To me this is about how the world sees happiness, and what happiness is in reality. I think we create images of what happiness looks like that we then try and impose on other people with the assumption that everything that makes us happy, must make other people happy. This is despite the fact that all sorts of happiness exist – the type autisitc people are experiencing when they stim, or listen to thier favourite song even if they know all the notes or read about a subject thier passionate about deep into the night is a sort of reserved, private kind that makes everything else seem insignificant in that moment. Rather than resenting these behaviours or treating them as abnormal or not appropriate to ones age, we as a society should see them as an aspect of individuality that the majority might never quite ‘relate to’, but can emphasise with and understand. By taking a more open minded approach to peoples behaviours, we will improve our understanding and respect for people different from us, as a whole.

What is Ableism? The issue with being ‘normal’

Lately, I’ve talked a lot about ableism and the devaluing of autistic peoples lives relative to neurotypicals, however I haven’t had much of a chance to examine why this is the case or where that comes from. For my last blog before I take a quick break over Easter, I would like to look at this idea of being ‘normal’, who decides what the term means and what its for. We tend to see the term normal as interchangeable with usual or expected, without considering who the term benefits and its relationship to not-normal. I hope this article gets you to think and surprises you, just like researching this idea surprised me .

Perhaps you can relate to this ostracism from ideas of normality – if you feel awkward in social situations, obsess over specific interests, or have a short attention span in certain situations, you might have been considered not-normal or even considered yourself in this way, relative to the other people around you. I know I have certainly experienced this when sat in meetings and other formal environments. None of these are uniquely autistic traits by the way, although they might be more present or grouped together in autistic people. That is why the concept of ‘neurodiversity’ is vital. It rejects the idea that people with traits perceived to be outside of the norm are somehow defective or ill and in need of education.

“The sickness is with a society which attaches a stigma to people unless their brains are wired in a way considered “normal” — hence the term “neurotypical.” If you’re neurodivergent, the neurotypical demand to be “normal” can contaminate every aspect of your life”

Matthew Rozsa, how the neurodivergent are mocked for being different

That last point about education is one I want to stress. Its common for our neurotypical peers and even friends to treat us like clients. This is usually done in good faith but comments like “your terrible at eye contact” or “your so awkward” or more often than not “get outside of your comfort zone” are usually unhelpful, not to mention detrimental to autistic peoples sense of self-worth. They also have the effect of drawing a line between conceptions of how you should behave, and behaviours that are seen as strange or unnatural.

Normal is seen as the apex of perfection that people strive to achieve. Regardless of whether you have a diagnosis of autism or the like, many people belabor under the descriptions of ‘weird’ or ‘strange’ which force them to strive for a constantly out of reach idea of normality, either by hiding thier traits or doing things to compensate for thier perceived lack of normality. I would argue that this is the wrong approach. We do not owe it to the privileged to change; they owe us thier understanding and empathy.

Attitudes towards disability can be flawed…

Part of the reason why having a child with an impairment or with autism is often seen as such a huge, earth-shattering deal in families is the interruption in the idea of “sameness” that it causes. Disability is often understood as some form of wrongness. No one, except possibly people diagnosed with autism, expects to have an autisitc child, so when they find out they have, that leads to the idea that they’ve got the wrong child – i.e something other than what was anticipated. Of course, with that perception comes the predictions of thinking your child may not experience the same level of achievement in life as a neurotypical person, however grounded in reality those predictions are. In these cases, the autism or the characteristics seen as a disability become salient, overwhelming the child’s other characteristics.

This idea disability being an interruption to sameness, is at the heart at the frequently ableist concept of the existence of “normal” and therefore “abnormal” or “subnomral”. Studies into the families of people labeled with disabilities were quite revealing and surprising to even me. One study found that many parents in the UK were frustrated by medical labels and diagnoses, and felt that ‘disability’ was something that had been thrust upon thier child to alienate them from so called ‘normal’ society. Equally, a US study conducted on parents of children living with disabilities found that most had grown up with the very medicalized view of disability as a personal weakness to be avoided and caused by the mothers poor choices. However this view was strongly challenged by getting to know and living with thier children in reality. What this shows to me is that a lot of perceptions of autism etc. are built of preconcieved ideas of what these conditions might look like. We don’t handle the idea that humans are diverse and that “if you’ve met one person with autism, you’ve met one person with autism” very well, and so we easily fall for scare stories, pity narratives and simple explanations of autism as meaning ‘broken’.

I don’t usually look at this from a parents point of view, mainly because so much of autism literature focuses on parents and children already. That said, it is a useful way of understanding the different ways of looking at disability, from the point of view of the onlooker.

For example, other terms for the ‘medical model’ are the ‘tragedy model’ or the ‘charity model’. At its most core elements, it considers autism to be something that needs to be fixed, either through finding a cure or through forcing that person to try and fit in to normal society, whatever that might be. This leads to the assumption that they are somehow a burden, which in turn increases stigma. With this comes assumptions about how much happiness a disabled person will experience over the course of thier lives. As I pointed out in my blog about Peter Singer, it is not possible to define happiness along strict lines, or predict how much happiness or tragedy someone will experience over the course of thier lives. However, this dosen’t stop people like him advocating for disabled children to be euthanized at birth or others to treat our lives as having considerably less value than that of ‘normal’ people. This might seem very theoretical but this has an impact on the film portrayals of us, the medical decisions that are made about the lives of people with learning disabilities and the jobs autisitc people can get into. This obsession with turning disability into a medical disorder pervades every aspect of our lives, and undermines our ability to experience our humanity, in a way which – ironically – feeds into the pity narratives that are patronizingly pinned on us. Therefore, its time for an alternative approach…

Defying ‘normality’…

What might an alternative approach to the model of disability we’ve been presented with look like? I think we can say for certain that it should do away with the idea of disability as a tragedy and cease comparing us to our neurotypical or non-disabled peers. A better understanding might be to say that disability exists mainly when barriers are imposed. That would force us to situate our understanding of conditions like autism, downs syndrome and physical impairments within the context of the social, economic and cultural systems which do make people less happy, which stop people who are perceived as being outside of ‘the norm’ from reaching thier full potential and which – in essence – disable people.

At a micro level this might involve making education systems more accessible, creating accommodating working environments and ways of working, creating a benefits system that puts compassion and understanding for the individual at its heart as well as health and support systems that do the same. Creating representative media and making all public and private spaces accessible is also part of this. At a wider level, a more ‘social’ model of disability might involve something as wide as looking to change the economic systems that prioritize an individuals ability to be ‘profitable’ above aspects like thier creativity while shoving aside those who are not considered ‘productive’ members of society.

A major difference between the social and medical models of disability is the separation of impairment from disability. From a social model perspective, disability is imposed upon people with an impairment’, while a medical model holds that disability is caused by or is synonymous with the condition in question, be that a physical or mental one. One criticism of the social model is that it dosent take account of the lived experience of disability and the problems that disability itself causes. From this perspective, its all well and good to say that we should be removing barriers but that does not mean that there are not difficulties intrinsic to being in a wheelchair or being autisitc.

Its a fair criticism in theory but one which dosent acknowledge what neurodiversity campaigners and advocates of the social model of disability actually believe; most advocates prefer to use the social-relational model of disability which says that yeah, there are personal experiences of impairments, of course there are, and in the case of something like autism those personal experiences might be good or bad. In this framework disability is defined by and experienced through impairment effects: barriers that your condition presents to you as a person, barriers to doing: i.e disabling restrictions such as an absence of wheelchair ramps or inaccessible language, and barriers to being: the unequal social relationships and systems that help to draw a distinction between ‘normal’, ‘functioning’ members of society and so called ‘abnormal’ people, who are frequently shut out of society altogether on the basis of its lack of ability to understand or accommodate for them.

Under a social-relational model of disability, people should receive all the help they need to thrive despite thier personal impairments, while we seek to build more accessible and friendly societies, that are welcoming to people of all abilities and ways of looking at the world. More controversially, we should seek to dismantle the attitudes and so-called normal ways of doing society that keep people with disabilities trapped in gated off areas and care settings, that keep us vulnerable to viruses like Covid because of medical negligence and biased judgments about the value of our lives, and which keeps us from being part of work, higher education, or social circles because of preconceptions about how we are and what we are able to do. There is an entire class of disabled people who are suffering under the burden of being told they are ‘not normal’. Ending the stigma and beginning to reshape our ideas about what is and isn’t normal could be the first step in achieving wider, social change.

An Atypical Perspective

To return to the question posed in the introduction, what is ableism? To me, ableism is not one thing but a network of ideas, systems and practices that produces an image of an ideal human – an archetype to strive to and try and become. Autism and disability, in contrast to this vision, is portrayed as less than human, imperfect, flawed. This is created and enforced through the contrasting states of ‘normal’ and ‘abnormal’. This understanding of disability as meaning a person is ‘abnormal’ is consistent with medical model where it is assumed that people who experience disability and their families want to be ‘normal’ and are subjected to many disabling expectations, for example, to be ‘independent’, to ‘adjust’ and ‘accept’ their situation.

Something I haven’t had time to go into today is how categories of ‘normal’ and ‘disabled’ emerged through the rise of capitalism. The suggestion that a social model is not relevant to the everyday reality of families who experience disability is false. In emphasizing an understanding of disability as socially constructed and imposed through prejudice, exclusion and environmental barriers, the model shows us how creating a fairer society for autistic and disabled people is not simply a question of making ‘reasonable adjustments’ but part of a wider social project aimed at reshaping who has value and who gets to be a member of society. ‘normal’ offers some ‘high functioning’ disabled people like myself the opportunity to be operate in the economy. Social theory, grounded in a progressive vision for society as a whole, offers disabled people the opportunity to transform their own lives and in so doing to transform the society in which they live into one in which everyone is valued. As an autistic
person, I know which of those choices I prefer.

Respect as Safety: The importance of ending male violence

I’m sure you’ve all heard by now about the appalling ‘alleged’ murder of Sarah Everard. For those of you reading internationally and perhaps less aware, last week she was attacked by a police officer. A search ensued after her boyfriend alerted the authorities that she was missing. She is now presumed dead after human remains were found in a local woods. The police officer in question is currently standing trial, which is why I’m using the kind of neutral language that I am here. The case remains an extreme but no less serious incident of the kind of thing many women understandably fear about being in public.

Re-enforcing this climate of fear was the police response to the vigil a few days later – an incident that has been the subject of much protest and outcry. In response to people gathering peacefully at clapham common to pay thier respects, all wearing masks and many socially distanced, the police broke up the vigil, pinned mourners to the ground and chucked them into the back of police vans. Many have rightfully pointed out that this is indicative of the climate of fear that exists towards women being out on the streets and excersing thier right to speak out against male violence.

The first part of this blog will give an overview of how I see my responsibility as a male in ending all forms of male violence no matter how subtle. As with everything else, my autism has coloured my way of looking at the issue. The second part of this blog contains a few observations from a friend of mine who is both autistic and female. In situations which are so serious, my words may have limited effect, however if I have the ability to add my voice (and Sofie’s) to the chorus of those calling for a change in how we understand and behave towards issues of safety and respect, then I feel I have a responsibility to do so.

Violence and the problem with ‘not all men’…

Before we go any further, I want to clarify what violence is. Using its broadest definition, violence is anything that directly or indirectly causes physical or emotional harm to other people. In that sense, violence could be anything from directly assulting someone, to using your words and actions in a way which makes people feel unsafe, to refusing to speak out against other, more serious forms of violence. Its not a perfect definition but its one that works when discussing men’s responsibility to stop male violence.

My first reactions to the case of Sarah Everard were emotional and upset. The police response at the vigil a few days later made me angry. I’m lucky in that neither of these incidents made me directly fear for my safety. One of the issues which means that violence against women and sexual harassment are such pervasive issues, is the deeply contradictory messaging surrounding them. A lot of the discourse focuses on what women should be doing, wrongly – in my opinion – shifting the responsibility away from the abuser on to women. As a man, it is my responsibility to make women – and everybody – feel safe, by not engaging in any wrongful behaviours. If I didn’t and followed the ‘Its women’s responsibility’ line, I would’nt have any basis on which to criticise others who verbally mock me for my outwardly autistic traits. Indeed, if it is women’s responsibility to protect themselves, why would’nt that include the right to speak out against abuse when it happens? The message around public safety and bodily autonomy directed towards women seems to be ‘take the necessary precautions so you can defend yourself if your attacked but don’t try and challenge any of the attitudes that lead to assult in the first place’. None of this is to say that people don’t have any responsibility for thier own safety. Everybody takes precautions to feel safe but no should have to feel victimized.

At some point, if you point this out regularly and to enough men, you are likely to hear someone say ‘not all men are like that’. The primal way you want to respond when you hear or see #NotAllMen is “yes, I fucking know. Nobody is suggesting that all men are abusive, simply that it is far too common, and that all men have thier part to play in stopping abuse from happening” . As far as I can see, the phrase ‘not all men’ comes from a primal desire to defend the group that you’re a part of. Its a composition error where men hear others criticisng male violence, and immediately feel under attack. Its the logical equivalent of hearing a story about someone with blue eyes doing something criminal, and immediately becoming offended because you’ve got blue eyes. Of course, in some cases people of a certain identity are made to look bad as a whole – this quite often happens when an autistic person does something bad and media outlets implicate thier autism. However, this is clearly not what is happening here. While many might – rightfully in my view – say that all men are capable of subtle forms of violence, nobody is conflating ‘individual men’ with ‘all men’. To pretend that they are is just absurd.

And yes, in case anyone is in any doubt, the problem is that severe. Evidence indicates that even using the narrower definitions,  violence by men in public spaces is disturbingly prevalent. Although the more extreme physical manifestations of violence such as abduction or murder are relatively rare, a large proportion of women report being assulted. And when women are subjected to serious physical violence or murder, it is usually men who perpetrate it. This is often despite extensive safety work from women. Contradictory messaging about being told to protect oneself while simultaneously being told that protesting is unreasonable and overreactive does nothing to keep women or anyone else safe. Fiona Vera Grey has pointed out how women are expected “the right amount of panic” to be viewed as having a reasonable response to the threat of violence. Even then, what they do may not be viewed as enough. All the while the problem of male violence goes overshadowed and overlooked.

A few thoughts from Sofie Bainbridge…

While I as a man have a responsibility to educate myself about sexism and forms of aggression against women to make sure I do not act in subtly discriminatory ways myself, I am actually incapable of claiming to know everything about the experience of being a female. For that reason, my friend Sofie, who is also on the autism spectrum, has provided a few thoughts which I’ve added some of my own notes to.

…”with me being a woman a woman and autistic, I feel more scared when hearing about these things happening“…

This connotes a degree of anxiety arising from news stories of assult and violence. My friend does take care to point out that violence can happen to anyone for a range of reasons. However, that does not mean anyone can specifically relate to this form of sexualised violence which is so common. That’s why I think its important not to shrug off the concerns of women with ‘everyone risks experiencing violence’ – this is true, but not everyone is necessarily at equal risk. Therefore, as this observation summarises, ignoring the different forms violence takes risks ignoring the causes of the problem and oversimplifying acts of aggression as ‘crimes’ with no social significance or relevance. As Sofie goes on:

“I do believe that there is a threat, especially when I’m frequenting out of society places like bridal paths“…

This points out that while in parts of society or in certain situations, there may be accepted way’s of behaving, in isolated, less formal scenario’s the message to women is clear – ‘the right to feel comfortable in this public space is mine and not yours’. The potential for violence from male members of the public may be particularly pronounced if they see a women ‘stimming’ or acting in ways that are perceived as strange. Of course, everyone should have the right to feel comfortable in all public and private spaces but this is rarely the case.

…”It is really difficult explaining to people that I’m autistic, and they don’t respect boundaries 90% of the time. They think I’m rude or ignorant and can be hostile as a result”…

This is a particularly insipid form of violence that happens to women and autistic people, albeit in different ways. Just looking at autism for a second, when people stand to close to us or touch us in ways we feel uncomfortable with, many of us pull back. Equally, we can be very quiet and reserved when meeting someone for the first time. Both these can be perceived as rude and aggressive. Being a woman introduces a form of sexualised violence into this whereby women who reject men’s advances are met with aggression. The fact that many face the risk of one – or in cases like these, both – of these forms of discrimination proves we need better understanding of boundaries and consent throughout society. As Sofie goes on to say:

“neurotypical men could take the time to understand more. It appears unless it is told in black and white they don’t understand. I also feel they could be less domineering”

I think this is something a lot of men could work to understand. Its important to note the issue of microaggressions – subtle behaviours that make women feel less comfortable. This could be something as simple as using sexist language or intentionally and knowingly walking behind a woman for a long period of time. Importantly, if your autisitc you will still notice subtle forms of discrimination. You might not be able to articulate and make sense of what is happening to you in that moment but just because someone struggles to make sense of thier own feelings, does not give anyone the right to abuse that process.

“sexism effects me, especially when I used to work in a male dominanted industry. I also feel that being a woman on the spectrum, I’m constantly compared to men on the spectrum, as though we are all the same”

This is another example of the vicious ways sexism and ableism often intersect. Autism was presumed only to effect boys, until quite recently. This has led to many woman going undiagnosed. Think about it, count how many representations of autism are about men, and count how many are about women. It says something when the most prominent representation of autisitc females in the media is Sia’s Music. Whatsmore, the common portrayals of women and autistic people in the media is as weak and timid. The generic preconceptions of ‘all autistic people. behave this way…’ or ‘all women are like this’ or even ‘autistic women should be like this..’ contribute towards the dehumanizing and stigmatization of these identities. What right then has anyone, when faced with the idea that all men do indeed have a responsibility to educate and be honest with themselves about sexism, to claim ‘not all men’?

An Atypical Perspective…

Sofie’s special interest as an autistic person is photography and she see’s her home as her safe space – a place she can find some peace and quiet, from the hectic qualities of everyday life. She says that while her hobby gives her a sense of safety, she dosent feel comfortable taking photographs everywhere. This struck me as a great illustrative point. If you’re a creative person you don’t want your creativity to be restricted in any way. You want, to put it simply, to be free. This is not just a creative impulse but a uniquely human one. Whether its to walk, to see your friends, or to take photographs, everyone has the right to dignity and respect in all areas of life. The case of Sarah Everad and the police response at Clapham common has illustrated how we are a woefully long way from achieving that goal of safety and respect for everyone. Fortunately, creativity and freedom to be oneself, is also the solution. Women and thier allies are lifting thier voices to demand a change in a range of creative, clever and inspirational ways. My hope is that these inspire people, paticulary men, to reflect on and change thier violent and discriminating behaviours in the struggle to achieve a safer world.

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.

Morality and Disability: ethical theory, utilitarianism and Peter Singer

Before I get into the body of this, some clarification; I was not expecting to do a blog on Peter Singer as I thought the controversies surrounding him would be best left alone. Then he did an interview with an independent media outlet that I respect, in which he brought up his utilitarianism and I thought that this was worth exploring.

Coining the term speciesism, his 1975 book Animal Liberation argues that all sentient beings should be regarded as morally equal in the sense that their interests ought to be considered equally. He differs from many vegans in that while he is against animal testing in many cases, his philosophy on life allows him to concede that some testing is necessary if, for example, its the only way to help alleviate human suffering on a grand scale.

He also proposes a theory of effective altruism – the notion that you should be altruistic in the most effective way possible. He recommends people give the majority of thier disposable income to charity, if it will reduce suffering for the most amount of people. Emotional attachment does not factor in to this worldview – even the interests of your own child do not count for more than those of a group of starving individuals.

However, he has attracted controversy for some of his views, and the ones we will be focusing on today are his views on disability. Notably, he has publicly justified the killing of infants with disabilities if doing so increases the happiness of ‘all involved’. Needless to say, I find that disgusting.

Underpinning Singers worldview is the concept of utilitarianism – a philosophy which believes that all actions should aim to maximise happiness and/or welfare for affected beings – in this case animals and humans. Utilitarian’s believe that the consequences of any actions are the only measurement of right and wrong so from an animal-rights, utilitarian perspective, us living in a culture that consumes animal products is immoral in that it sustains the mass suffering of animals. On the one hand, this is a kind philosophy that can encourage generosity. On the other, this can seem quite a cold and calculating idea that prioritizes the ‘greater good’ above other moral values. We will delve into Singer more later but first lets provide some background…

Some thoughts on utilitarianism…

In its original form, the principle of utilitarian moral theory states that the correct action is the one that produces the most happiness for all involved. It has certainly been a useful theory in the past and can result in adherents fighting for a fairer society. John Stuart Mill, who adopted Jeremy Bentham’s original theory fought for women’s rights, against slavery, and for fair labour practices. Aside from that, I think ideas like effective altruism have thier place in encouraging humane acts of charity. I, for instance, would recommend you donate to the Autistic Self Advocacy Network over Autism Speaks any day, because while both of these actions are well intentioned, the former group are likely to spend thier resources on actions that help people on the spectrum, while the later would use those funds in ways that hurt us. As well as that, I completely see the appeal of looking at issues on a macro as opposed to a micro level. I too tend to see things in more systemic terms, tending to observe how specific decisions, particularly ones by individuals in authority, effect the rest of society. Utilitarianism also considers this and is not just focused on the individual.

Still, the theory is terribly flawed in other places. Applying a utilitarian mindset asks us to compare our possible actions based on the benefits and harms they reap. That is to say, assign values to the benefits of each of our actions. However this is not congruent with how people think in real life and relies on subjective, rather than objective judgments. How do we go about assigning a value to life or to art for instance? You could make a piece of art and justify it on the basis that your work brings happiness into other peoples lives, whereas to someone else that time could have been better spent being more ‘productive’. More than that though, no one can be expected to calculate the individual consequences of each and every one of thier actions. Complexity theory exists precisely to chart the individual causes of social problems and how those causes interact with each other, but our cognitive ability to measure and to predict the benefits and harms resulting from a decision is dubious, to say the least.

It’s also arguable that the idea violates the standards of justice in pursuit of finding the greatest good for the greatest number. One example which often gets given is of an innocent man being accused of a crime. There is lots of civil unrest surrounding the case, negatively affecting a lot of peoples wellbeing and happiness. In the spirit of fairness, most would advocate that the innocent man be set free. However, from a utilitarian perspective, wouldn’t the better decision be to sentence him, if that reduces the social unrest overall? A lot of disabled people can relate to this line of thinking – if, for instance, your disability is defined in terms of suffering and difficulty, you might struggle to find work as businesses might view employing someone with a disability to be a net-negative with the risk of reducing how comfortable staff members and customers feel. That’s obviously completely unreasonable, but I hope you can see that making decisions based on what increases overall happiness can be based on subjective value judgments that may not be congruent with equality and progress. It’s wrong to unjustly punish someone, but not if all that matters to you is the net gain of what you see as ‘happiness’. To utilitarians, increasing the happiness of the many can justify making a few miserable.

We can conclude from this that while consequence should be an important guiding factor in our decisions, it should not be the only guiding factor in our decisions. Rights, fairness and even emotion can be equally important. Utilitarianism boils down the deeply layered process of making a decision down to a mathematical calculation of good and bad. For that reason, while it can be a powerful reminder that morality calls us to look beyond the self to the good of all, it can also be harmful. Peter Singer, on disability, is a prime example of this.

So how does this relate to disability?…

At the end of the interview, the interviewer asked about the controversy surrounding his stance on disability. See, Singers views on this subject have made him something of an enemy to the community and the interview made me initially angry that the controversy was addressed in what I saw as a quite a non-challenging way. In Practical Ethics, Singer details how he thinks the interests of beings should be weighted, arguing that:

“When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the hemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.”

Singer, Practical Ethics

This rests on a series of assumptions. What does ‘lead to’ mean? Parents may not have the foresight to know if they will have another child, and why would they necessarily choose not to have another if they kept the disabled child? Why is Singer presuming to know that the ‘hemophiliac’ will lead a less ‘happy’ life than a non-disabled one? The quote furthers the idea that disability is more likely to presuppose unhappiness than being abled, when ‘happiness’ is a subjective measurement that depends on a range of factors. By some ratios – family, where you live, support available to you – some severely disabled people have better lives than that of some abled people. Singer would probably prefer to talk about people who are likely to ‘suffer’ but that’s a word that’s so often used to describe anyone with a disability that the option of euthanasia could apply in practically every case. My autism means that I can struggle with my sensitivity. If we’re comparing, I might not have experienced some of the happiness that I would if I were non-autistic. Should I have been killed? How on earth can parents make a judgement about the ‘total happiness’ that a person will experience? Even if they could, this would still be ableist as it presupposes that abled people can make value judgements about our lives based on subjective concepts about our happiness relative to that of non-disabled people.

In the interview I watched, Singer draws a comparison between this and abortion: ‘many of the same people who criticise what I say about people with disability will defend the right of a pregnant women to end her pregnancy and that will include if the child has a disability’. If abortion were allowed up to the point of birth, he might have a point, but this is rarely the case. I’m from the UK, where there’s a 24 week limit justified in law by the fact that this is when life becomes capable of surviving on its own. Irrespective of your views on this issue, this comparison doesn’t work. I’m not going to delve deep into issues like screening for downs syndrome, except to say that the lives of people with disabilities are worth living. I’m going to recommend you read this article in the Atlantic which gives nuance to the debate.

The article makes clear that if you handed any parent a whole list of every factor that would increase their chances of unhappiness relative to someone else —illnesses etc. then everyone would be too scared. It concludes that we should move away from traditional measures of what counts as happiness. At one point, the author points out that people in the medical profession, or in this case philosophers, base their identity on their intelligence; ‘might the system be biased on the question of whose lives have value?’. You can perhaps see why to some disabled people, Singer might appear to be calling into question the value they add to the world.

I’m bringing value judgements into this discussion because this factors into Singers own thinking. In one interview he posed the question that if most people see the life of a dog or a pig as inferior to that of a human being “On what basis could they hold that the life of an intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being?”. However, intellectual capacity is not calculable to such a specific extent. Again, there’s no consideration of emotion – if you saw a dog and a disabled person drowning, you’d instinctually want to rescue the person, either because they have longer life expectancy, or because there’s more sentimental value attached to the person. Interestingly, in another article, Singer argues for rationing healthcare based on average life expectancy – this seems to contradict his assertion that the value of an intellectually disabled person is potentially worth less than that of a dog. This also relates to a blog post I wrote a couple of weeks ago, where I talked about patients in the UK being hit with do not resuscitate notices because of thier learning disabilities. We don’t know what the rationale for this was but there’s a chance that the shorter lives of many people with learning disabilities, and the fact that they are less likely to be ‘productive members of society’, was part of the decision. However, both of these are largely social phenomena based on the fact that intellectually disabled people often don’t have access to the medical support that they need, and are often shut out of society.

In that sense, shouldn’t a true ethical utilitarian approach to disability be to advocate for making society more fair and safe for marginalized groups? Wouldn’t that be more in line with the concept of creating happiness, than relying on value assessments as to who is deserving of life, the conclusions to which are informed by existing stigma? Don’t get me wrong, Singer would say that he is in favour of that levelling up, but to me its about the precedent set by his views. His is a cold, calculating utilitarianism that asks people to make strong decisions that ignore complexity, based on arbitrary concepts about the ‘utility’ of decisions. There’s a short-sightedness at play that ignores the fact that having less disabled people and treating their birth with disgust, means that we are less likely dismantle the barriers which make their lives unhappy in the first place. Any attempts to create that new world have to be grounded in approach which grants dignity and agency to disabled people, so that they can be an essential part in shaping the society we want to see. Any approach that ignores that, and looks to short-term solutions in the vague hope of long term gains is simply papering over the problems we have with vague platitudes of mercy and reducing suffering. It’s an approach which makes sense to some utilitarian’s but can only be antithetical in the long run.

An Atypical Perspective…

Much as this blog gives the impression of being about Pete Singer and utilitarianism, its moreso about our cultural attitudes to disability and how we assign value based on the assumptions that non-disabled and disabled mean better and worse off respectively. We base our conception of downs syndrome and ASD and hemophilia off sets of assumed truths. “They’re never going to have a job, they’re never going to get married, they’re never going to go to uni”. Indeed the narrative that ‘disabled’ people do attend uni and get married are helpful in pointing out how disability is socially forced upon people. Nothing changed in the biological make-up these conditions to allow these changes to happen. Rather, society shifted focus to better accommodate them.

But what about those that don’t work or get married but like to do art or to be with family. Do we ascribe less value to these people based on a culturally constructed notion that they are somehow “worse off? Singer might answer yes and that families and medical experts should get to decide whether or not that persons life is worth living. One of the reasons he sees it as appropriate to kill babies with disabilities is because their lives are difficult and they are not first in line to be adopted. What this fails to consider is the fact that these difficulties are socially constructed, and that an approach to ensuring ‘more happiness’ should be changing society, not getting rid of the disabled.